Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study

Impacts on young people of providing care

Previous research has shown that providing care has multiple impacts on young people, including their health and wellbeing,4,22,23 education4,24,25 and employment prospects. 4,20,26 This creates substantial associated costs to individuals, the government and the NHS. 20 Transition into adulthood can be a particular challenge for young carers because their caring responsibilities may be a barrier to employment, vocational training or further education. 27 However, and despite the increased rights to support described above, there are knowledge gaps on how to best support young carers and prevent these impacts. 22 This is especially the case for young adult carers aged 16–25 years; carers and care recipients who currently under-access services and people from underserved population groups such as ethnic minorities families. 28

What is good or not good about existing services? What can be improved?

Recent research findings have illustrated some of the problems with support that is currently available for younger carers and some of the ways in which support has been successful. 24,27 Qualitative research with young carers has shown that they value opportunities for respite. 29 By providing fun and meaningful activities, young carers can experience hiatus from their caring responsibilities and serious concerns. 30 However, when asked how services can best support them, young carers have identified that better support for the person they care for is, or would be, most useful. 4,29

As such, some scholars have highlighted the benefits of services that provide a whole-family approach to support. Ronicle and Kendall, in their 2011 research report, concluded that whole-family approaches had been helpful in reducing the proportion of young people taking on inappropriate caring responsibilities. 31 Moreover, Carers Trust, which supports 24,000 young carers in the UK each year, has noted how young carers and their families have spoken about the benefits of family support workers, who act as a main contact and liaison with several services that young carers and families use. 32 Similarly, Whitley and Wooldridge,33 in their evaluation of Sheffield Young Carers Family Project, found that the 90 families involved in the project indicated a positive experience. They appreciated the one-to-one intervention from family support workers due to the high quality of support provided and their dedicated and proactive nature. On top of this, whole-family social activities (such as group support and parent networking events) were beneficial. For young carers, they offered the opportunity to do fun and exciting activities; for cared for people, these activities facilitated them to speak to other families with a young carer, increasing their informal support networks and reducing isolation. The combination of dedicated family support and opportunities for social activities was a feature that was unique to the programme. As such, demand was high, with more than 30 families on a waiting list for involvement. 33

Outside of the UK, Schlarmann et al. (2011)34 have highlighted the benefits of Germany’s first young carers project, Supakids. Taking a whole-family approach, participants felt that the project allowed them to be ‘as they are’ and meet others in similar situations. Moreover, the service provided a first port of call for a variety of problems, providing a break from life at home. However, as Hafting and colleagues emphasise in their 2019 study, taking a whole-family approach is necessary but not sufficient when identifying young carers in Norway. 35 They found that this was because parents felt ambivalent about revealing information about family matters, which can prevent young carers from receiving further support, while general practitioners (GPs) felt ambivalent about bringing up this potentially sensitive topic of conversation with adult care recipients. Subsequently, services focusing on adults (such as substance misuse services) must recognise their responsibility for the wellbeing of a client’s child or children. 36

Few studies focus on support for young carers provided at schools and educational institutions; however, Eley’s 2004 report provides insight through interviews with 11 young carers in Scotland. Young people in this study felt ambivalent about disclosing their role as a carer for fear of unwanted intrusion in their family life, or reactions from teachers who would consider their caring responsibilities to be an ‘excuse’ for absence or poor performance. As such, although young people were reluctant to be identified, they felt frustrated by their teachers’ lack of awareness. 37 Young people may also yearn for normalcy, impacting their willingness to disclose their identity. 38

An evaluation of the Young Carers in Schools Programme (YCSP) by the charity Coram39 provides insight into the benefits this England-wide initiative offers. Firstly, the introduction of the initiative in schools resulted in increased identification of young carers, which led to an increase in referrals to local agencies and community-based carers services. This gave the young carers opportunities outside of school that they otherwise would not have accessed.

According to respondents of the survey (78% of which were leaders for young carers within schools, and 15% of which were support workers, school managers and family liaison officers), greater awareness of the needs of young carers through the YCSP helped staff to be more flexible and understanding, helping young carers to manage their schoolwork and have a more fulfilled student experience. Schools reported an improvement in academic engagement and attainment, with a higher motivation to learn.

Participants in Coram’s survey also reported that young carers appeared to benefit from participation in group activities and access to a supportive peer group. They reported that young carers were demonstrating widespread improvements in wellbeing, happiness and confidence. 39 The benefits of peer support have also been highlighted by other studies in the UK and Austria, which have investigated the experiences of young carers supporting parents with mental illness. 40,41

Strengthening the resilience of young carers through psychoeducation and support groups has been a benefit identified by Gettings et al. ,42 whose longitudinal feasibility study investigated methods of audio-conferencing to facilitate support groups for siblings of people with a neurodevelopmental disability in the UK. Young carers involved in the study stated how they felt more prepared, as they gained a better understanding of their siblings’ neurodisability. Moreover, the group provided a space where young carers could share difficult thoughts and feelings and reduce their isolation.

The method by which these programmes are delivered could have a major influence on how successful they are in supporting young carers. Although eHealth is becoming a more accessible and reliable means by which vulnerable individuals may seek support and information,43,44 for young adult carers in the UK, in-person support was reported as preferable in the past,8 although this may have changed in the intervening years. Online interventions may include the benefit of anonymity,45 but internet literacy and access can be barriers preventing individuals from reaching the information and help they require, as well as having the potential for being overheard. Moreover, young people involved in previous studies have noted the importance of services in youth-friendly formats46 as well as professional and responsive workers. 47

Studies in the United States (US) and Australia have also suggested that access to skill-building and targeted education programmes may be beneficial for young carers, providing them with the opportunity for self-efficacy and proficiency in the care they provide. 48–50 For example, the YCare protocol piloted by Kavanaugh and colleagues aimed to provide supportive training for young carers, ages 8–16 years. Participants in this study reported a significant increase in their confidence to complete caring tasks correctly, and many noted the benefit of meeting peers in a group training environment. 50

In summary, the literature fails to capture the service landscape for young carers in the UK from the perspective of young carers themselves. Although existing studies have indicated some benefits of particular programmes – such as a whole-family approach, or provision of respite opportunities for young carers – these do not give us a comprehensive idea of how young carers think services could be improved; particularly as many studies are based outside of the UK, are focused on a small geographical area, and/or predate the current rights for young carers and the more recent rise in young carer voluntary sector support organisations. 51

What additional support is needed

Financial support is a prominent area highlighted in the literature, as many young carers have unmet financial needs. In 2013, a longitudinal study of young carers in England found that the average income of a young carer’s family was on average £5000 less than a family with no young carer. 52 Moreover, the study found that young carers were more than four times as likely as non-carers to be in families where no-one was in paid work. Qualitative research with young carers often found that they were aware of the financial constraints their families faced. 29 More recently, Vizard and colleagues53 examined child poverty outcomes among young carers in the UK from 2005 to 2015 and found that in the wake of the financial crisis, recession and the onset of austerity, young carers have fared worse than other young people who did not have caring responsibilities. As such, this strongly suggests that young carers and their families face difficulties directly aggravated by poverty.

One contributing factor of lower family income is the difficulties young carers face with study and employment. Young carers are not included in the list of vulnerable groups who can apply for the 16–19 Bursary Fund, although individual higher education institutions may be willing to give young carers a discretionary bursary. The lower age limit for receipt of a carer’s allowance is 16, which excludes young carers below this age. The benefit also requires the person cared for to be in receipt of a disability-related benefit and for the carer to be providing 35 hours of care per week or more. For those who do qualify, there is an earnings limit for receipt of a carer’s allowance of £132 per week. The benefit specifically excludes carers in full-time education or those who study for more than 21 hours per week. Subsequently, in their interviews of young carers in the US, Keigher and colleagues54 found that young carers unable to seek employment may risk illegal activity (such as drug dealing) or other unstable jobs to make ends meet. 54

Young carers in school or college in the UK have also identified areas in which they require further support, including difficulties making friends who understand their caring role;55 challenges meeting the needs of a course or their homework;56 and bullying. 25 Young carers may also be more likely to miss and be late for school than their non-carer peers. 57 In light of this, as Becker and Becker8 suggest, young carers require the support and understanding of teachers – and from the education system more generally. Of course, although raising awareness and sharing information about young carers among staff and other students may be helpful, Bostock58 reminds us that this needs to be done according to the wishes of the young person, as some are more comfortable with their sensitive information being shared than others.

Another significant unmet need highlighted in the literature is communication within and between support services. Because many services work in isolation, this can lead to delays, miscommunication and the added stress of young carers and their families having to repetitively tell their stories to a wide number of services. Moreover, as Becker and Becker8 have indicated, there is a gap between support offered by youth services and adult services. As such, some young adult carers have suggested that the creation of an interdisciplinary and interprofessional network would aid communication between services in the UK. 59 Leading researchers in the field are also calling for a new agenda for policy development, one that champions greater awareness of the need for interdisciplinary and multi-agency working. 4

With regard to services for the care recipient, which could help reduce caring responsibilities, several studies point to difficulties they may face as a result of shortcomings within the healthcare services for care recipients. For example, according to young carers, they may not be included in decisions regarding the provision of care, or discussions between healthcare professionals and the care recipient. 56 The inclusion of young carers in this way can provide them with education and knowledge to support them in their role as a carer, and furthermore, it can instil confidence that the care recipient is well supported. 50

Turning to studies based outside of the UK, Hamilton and Adamson60 have suggested that identifying gaps in service provision may be difficult for young carers in Australia, as they may have limited time away from their caring responsibilities. Moreover, Moore and colleagues found that many of the young carers in their Australian study reported that the level of care they provided was downplayed either by themselves, their families or the services they accessed. 47 This may be due to stigma attached to the role of a young carer, particular family dynamics, or inadequate needs assessments by local service providers. Smyth and colleagues61 have also highlighted how young carers may not identify as such and therefore remain ‘hidden’ to services and support providers. As such, unidentified support needs may be prevalent among young carers and their families. In light of this, Moore and colleagues recommend a service approach that focuses on the impact of the responsibilities that young carers have, with an understanding that there are multifaceted issues behind these impacts. On top of this, as the needs of care recipients, young carers and their families change, services need to evolve and adapt to ensure an adequate provision of care, delivered at a pace that suited them. 62 This may be relevant to young carers in the UK who have found that their level of caring responsibilities has increased since the COVID-19 pandemic. 63

Through their interviews with young carers and young adult carers in Switzerland, Leu and colleagues45 have emphasised that there should be greater inclusion of the needs of young carers in emotional support and prevention programmes for children and adolescents with ill parents or siblings. From studies speaking to young carers and young adult carers in contexts outside of the UK, services to meet this need could include links to, and communication with, other people with similar experiences29,45,47 or advice from professionals on how to support themselves and practise self-care. 45 Two key components of these relationships, for young carers, is the feeling of trust in the person(s) they are talking to47 and that there is continuity within these relationships, whereby a stronger connection can be built. 62

Overall, studies have identified some of the unmet needs of young carers in the UK but offer little insight with regard to what this support may look like, or how services may be improved. Although it has been suggested that families with young carers may face financial difficulty, the literature, as of yet, has failed to fully investigate young carers’ perspectives about these issues.

Barriers to support

Research literature identifies numerous factors that may prevent young carers and their families from accessing support. These can be grouped into three overlapping categories: first, barriers of communication at the service level; second, barriers of identification (at both the personal and service level); and third, barriers of design, organisation and delivery of services.

1. Confidentiality and data security

We adhered to the 2018 Data Protection Act as well as General Data Protection Regulation (GDPR) guidance related to the security of information. Completed paper materials (consent forms) are stored in locked filing cabinets in secure offices at the LSE. Access is by the research team. Interviews were transcribed by a professional transcription service, also adhering to GDPR guidelines, and data have been anonymised. Interview recordings and transcripts are held on a secure folder on the LSE servers accessed from password-protected computers in secure offices at the LSE. Information sheets explained that information would be kept confidential. The exception to confidentiality was that if the participants in interviews or focus groups raised concerns of serious risk of harm to participants or others. In this event we had a policy to aim to talk to the person and potentially take further action as required (see also Safeguarding below). This was also explained in the participant information sheets.

2. Safeguarding

We had in place robust safeguarding procedures for the study, developed with relevant experienced organisations and based on previous materials. This included situations where safeguarding issues might be disclosed and covered both the research and advisory processes. LSE also has a safeguarding procedure. Each key collaborating organisation had its own extensive safeguarding procedure which we and they also adhered to. Researchers carrying out the focus groups and interviews were Disclosure and Barring Service (DBS) checked and had training and experience in conducting research with vulnerable adults and children. Project and support workers also had DBS checks.

Participant information sheets and advisory group information sheets explained the limits to confidentiality (i.e. that everything they told us would be confidential unless they told us something that indicated that they or someone else was at risk of harm, in which case we would discuss this with them before telling anyone else if possible). This was reiterated at the beginning of interviews, focus groups and advisory group meetings and conversations. If potential harm was disclosed, we followed our and others’ procedures. Participant information sheets also included helplines and information about what to do if a participant felt that they or someone they know was at risk of harm. Information sheets were available in age-appropriate versions.

3. Raising potentially sensitive topics

We took a number of measures developed in previous research which carried out interviews with vulnerable children and young people, adapted and built on for this project. These measures were based on our experience of conducting research on potentially sensitive subjects and were refined in conjunction with young carer advisors and with input from Health Research Authority (HRA) research ethics. Focus group facilitators/interviewers have extensive experience and expertise in this area. Experienced support workers were available during and after focus groups and interviews in case anything came up that the young people needed to discuss or wanted additional support with.

4. Consent

We sought informed consent from participants. We followed the HRA guidance on seeking consent for research from children. 92 If the participant was aged under 16 years, we sought assent from the young people themselves and consent from their parent/guardian. For participants aged 16 years or older, we sought consent directly from them. Information sheets to inform consent were distributed. These explained the purpose and nature of the research; what taking part involved and the potential benefits, risks and burdens; confidentiality; anonymisation of data and the voluntary nature of participation. Consent was also discussed with participants before the focus group/Interview began covering key points from the information sheet and consent taken either verbally or in person depending on the format. We liaised with project workers to get informed consent from parents/guardians before the focus group/interview but final consent, taken at the focus group/interview, was from participants. The child could refuse consent even if their parent had agreed consent and this was made clear to both parties. Participants were informed and reminded of the option to withdraw at any point including during the interview/focus group. Information sheets to inform consent were available in age-appropriate versions.

Locality 1

Large city in the North of England; approximately a fifth of the population is from ethnic minority backgrounds; range of socioeconomic circumstances, with several areas with high levels of deprivation.

Locality 2

County in the South of England with a mix of rural areas, towns and cities. Lower than national average proportion from ethnic minority backgrounds; range of socioeconomic circumstances, with several areas with high levels of deprivation.

Specific additionally marginalised groups: young people providing care and the people they care for who experience stigmatised conditions, such as severe mental ill health and/or substance misuse.

Locality 3

Rural county in the North East of England; high proportion of people from White British backgrounds; range of socioeconomic circumstances, with high levels of deprivation in many areas.

Specific additionally marginalised groups: young people providing care and the people they care for who are rurally isolated; caring for/experiencing severe mental ill health, in some cases with substance misuse.

Locality 4

Coastal area in North West England with high area deprivation, below-average high household income, and much higher-than-average child poverty.

Specific additionally marginalised groups: young people providing care and the people for whom they care who experience stigmatised conditions, such as severe mental ill health and/or substance misuse.

Locality 4 was added to the study part-way through in response to a call for additional workstreams focusing on mental ill health and particular regions that have high mental health needs but are historically underserved by research activity on the topic.

Focus groups

Focus groups were co-facilitated by two of the research team and project workers and aimed to discuss participants’ experiences with services, features of services and support needed and barriers to seeking support (research questions 1, 2 and 3). Focus groups were carried out in person, with one exception. Informed consent was sought to audio record the sessions, with assurances of confidentiality. Ground rules such as keeping confidentiality within the group were discussed and agreed with participants, the research team, and project or support workers. Topics for discussion included what aspects of services and other support participants had found helpful, less helpful and could be improved; what additional support was needed: what needs it would meet, what features it would have, and how and by whom it would be delivered; and barriers to getting the support that is needed.

Focus groups took about 2 hours including a break for food, usually pizza. We used a range of methods for the focus groups, co-developed with practitioners and young carer advisors and informed by the available literature. 93 This enabled a range of ways (verbal, visual, written, group, individual) for young carers to talk about their experiences. 93 Data collection methods included group and paired discussions, use of flipchart and stickers, drawing, writing and annotation. Data collection methods were designed to be engaging and interactive. We adapted methods and format according to the age, number and vibe of each group. For example, ice breakers and interim and closing activities were different for different age groups; these were often chosen by the co-facilitators from the care organisations. We also somewhat adapted activities depending on the nature and size of the group. Differences included the degree to which we worked with people individually, or held smaller group discussions within the larger group. The researchers took fieldnotes throughout.

We began the groups with icebreaker activities before we started on the topics and tasks. Following these activities, we began by working as a group to develop a list of all the different types of services and other support that young carers (or care recipients) come into contact with. Participants called out different people or services involved with them and their family, with prompts as needed from the research team (e.g. ‘Is there anyone that comes to your house? Anyone that you see at school? Anyone you see at other places? Anything you do for fun that is important to you?’). The research team made a list on a flipchart that the whole group could see. Some discussion about experiences with these services took place during the making of the list. Once we had the long list of services, we then took participants up to the flipchart, usually in pairs. Each participant had their own set of coloured stickers and during the discussions at the flipchart they were asked to rate services they had been in contact with, using stickers of different colours. The colours indicated whether the service or support had been good, ok but could be better, or bad. For ‘bad’ it was further suggested that this might mean they recommended other young carers to avoid this service. For the parent groups, we used coloured pens rather than stickers and did the rating activity as a group.

This rating exercise then led to discussion with the pair at the flipchart, or sometimes a single person, about what was helpful and unhelpful about services. This was done as a group for parents, though parents also shared information and views individually, for example during a break or while people were working alone on the ‘ideal world’ task. We were able to follow up these ratings with questions like, ‘so you gave this one a bad rating – could you tell me about that?’ The chart was annotated with key points by the researcher at the flipchart. The researcher also took notes, especially where information was personal and not appropriate to record on the flipchart. When points were added to the flipchart, this was discussed with the participant (‘shall I write that down’?). While some participants were at the flipchart, the remainder carried on with other activities, described below.

To explore additional unmet need, participants were guided to individually, or with the research team, annotate a simple representation of a young carer and the person they care for, with their views of the support they or someone else in their situation would receive in an ‘ideal world’, and which currently unmet needs it would help meet. Specifically, they were asked to consider what sort of things would help support young people who look after someone at home. We explained that this could include both help for the young carer and for the person they cared for. Researchers discussed the activity with the young people while they were doing it, asked prompts, and took notes. This was initially going to be a group activity. COVID-19 rules meant we could not do it this way, but we found that participants individually annotating the diagrams with the research team or support workers worked well for participants and gave them options for individual work and discussions. In later sessions, when restrictions were reduced, some participants completed the task in pairs, but each still completing their own sheet.

To explore barriers experienced by young carers and the people they supported, we asked participants to individually, in pairs, or with the research team, write on coloured bricks their views and experiences of barriers to support. Researchers prompted as needed. Each pair or individual then read out two barriers for others in the group to comment on, add to, agree or disagree with, facilitated by the research team.

We finished with a summary and synthesis activity. In this, the research team attempted to summarise key points made in the session by presenting what we understood to be the aspects and components that made up a good and not-so-good support or service, and what additional support was needed. We asked participants to indicate whether they agreed, disagreed or were not sure by holding up green, red and yellow cards, respectively. Participants could also add to the summary verbally or in written form. This gave participants an opportunity to consider whether we had listened properly; had understood correctly; and to establish areas of consensus and dissensus. To end the group, we held a ‘cool down’ activity unrelated to the study topics and reminded participants of the availability of the research team and the attending support workers after the group and the information sheet with helplines.

One-to-one, in-depth semistructured interviews were carried out where participants preferred this alternative. Interviews explored individual experiences of services, needs and barriers to finding or accessing services and other support (research questions 1, 2 and 3). Interviews took place variously by phone, in person in a place convenient and accessible for the participant, and online.

We carried out a total of 21 focus groups across the four areas, one online and the remainder in person. Two focus groups were carried out with adult care recipients and 19 with young carers. There were approximately 6–8 participants per group. The number of participants per focus group was based on typically suggested optimum size94 and on our previous experience holding focus groups with young people. For practical reasons, some groups were bigger or smaller than this in practice. The combined number of participants enabled us to cover a range of experiences, allowing the emergence of principle and subthemes, while remaining manageable within the project. The final sample numbers were determined by the continuing emergence of new themes, or where saturation of themes appears to be reached, as well as practical considerations. We also carried out two in-person interviews with care recipients and eight phone or online interviews with young carers. Focus groups and interviews for young carers and for care recipients took place separately from each other. The resultant sample was 150 participants, of which 17 were care recipients. Participants were aged 9–25 years with a range of caring and life circumstances and sociodemographic characteristics, including ethnicity, gender and social class. Forty of the carer participants were aged 9–11 years, 57 were aged 12–15 years, and 36 were aged 16–25 years. Where known, 25 cared for a sibling, 46 for a parent and 2 for another relative. Some cared for more than 1 person. Reasons for needing care, where known, were mental ill health (N = 26), physical ill health (N = 19), substance misuse (N = 8) and other (N = 5). Other included dementia, neurodiversity and learning disability. Many of the people cared for had more than one care need, for example mental and physical ill health. Care recipient participants were aged 16 years or older and had a range of physical and/or mental care and support needs. All care recipient participants were parents of the young person who cared for them. Although the inclusion criteria for care recipient participants potentially allowed for siblings to take part, in the event only parents were included. This was due to the existing networks and contacts of the collaborating young carers’ organisations; siblings tended not to be involved with the organisations in the same way that parents were. There were in addition ethical concerns from organisations about inviting sibling care recipients to participate, due to the need to identify their sibling as a carer and around ambiguities in who were the care recipients within the family.

Practitioner workshops

We held workshops for practitioners from each of the four study areas. The initial plan was to hold them in person by locality, but we decided to hold them online for flexibility and ease of taking part for participants. This method also meant we could include practitioners from different locations in the same workshops. In the workshops we discussed selected key findings from the focus groups and interviews and explored the applicability of the findings to practice, barriers to putting the findings into practice, and any facilitating factors, or examples from practice where there had been successful approaches addressing the issues under discussion. We wanted to find out how the findings related to current service provision from the perspective of service providers and commissioners. The aims were: (1) to help inform study recommendations and (2) to address research question 4: ‘What are the barriers and facilitators for practitioners in providing support and services perceived as acceptable and appropriate by young carers and the people they support?’

Three workshops were held with 19 practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the NHS, adult social care and social care commissioners (Table 1). The first workshop was attended by five practitioners, the second by eight and the third by six. Each session lasted 90 minutes. We recruited practitioners through local young carer collaborating organisations in the four localities which contacted their wider networks to invite people to the workshops. The choice of types of service to invite was informed by findings from the focus groups and interviews, and by discussion with project advisors and collaborating organisations. A mix of practitioners from different service types was included in each workshop; the full list of the practitioner job roles and service types of those who took part is shown in Table 1.

Following discussion among research team members and with project advisors, we chose the following key themes (aspects of valued or wished-for support), from the analysis of focus groups and interviews, to discuss in the workshops:

1. Signposting and linking to support

2. On-call and ongoing support/changing your mind

3. Support that reduces the young person’s caring responsibilities

4. Support that considers the whole family

5. Someone who listens and understands/building relationships and trust

For each theme we first briefly presented the research findings then invited discussion. At the first two workshops we discussed themes 1–4. For the third workshop theme 1 was replaced with theme 5, as we felt theme 1 had been well covered.

We followed up the presentation of each theme with questions on a slide to prompt discussion, but practitioners were keen to address the issues raised and discussion flowed easily. We were interested in hearing from practitioners on the following types of questions:

• How does/might this work in practice?

• What does/would get in the way of you providing that support?

• What would help address these difficulties?

What is helpful or unhelpful about specific service types?

A wide range of views were expressed by participants. Table 3 summarises key themes which are related to four specific types of service and support; the themes are then explained and illustrated, with attention paid to where there were differing views.

Cross-service themes about what makes support helpful or unhelpful

There were strong themes emerging from the analysis about what makes support helpful or unhelpful. The themes presented below apply across different service types, and emerged during discussions about what it was that made some interactions helpful and others not, or some people helpful and others not. The factors set out below apply across services to people generally in a one-to-one role with the young carer or parent respondent, including social and family support workers, as well as individuals in the service types discussed above.

‘A bit less care – a bit less looking after to do’: Young carers and their families say they need support that reduces young people’s caring responsibilities

Participants in the study identified three main needs that required the reduction or removal of caring responsibilities. These needs, or subthemes, were (1) to enable them to pursue their own personal goals and interests; (2) to have less or shared responsibility; and (3) to improve the life of the care recipient.

Young carers say they need support that helps with some of the impacts of caring and/or their other life issues

‘Mitigation’ involves services and support for young carers that aims to address, and in our framework to also improve, some of the areas of young carers’ lives that caring has negatively impacted. Young carers identified four domains where support was needed to mitigate negative impacts: their mental health and wellbeing; education; social connections and relationships with family. For some participants, these appeared to be areas where unpaid caring had had negative effects, education being perhaps the clearest example. In others, there was a more complex mix of care provision leading to, or worsening, a young person’s mental health, for example, and other issues that existed for the young person outside of their caring role. This highlights the importance of recognising the context in which young caring takes place for individuals and supporting them accordingly.

Young carers say they need support that assists with their caring role

‘Carer as resource’ support models and policies aim to assist the carer in their caring role, including ensuring that it is sustainable. For young carers in the study, subthemes related to unmet need for assistance included peer support; information; and awareness, recognition and understanding.

Multiple roles

Support or services for young carers need to have multiple functions, supporting both the young carer and care recipient, reducing, mitigating and/or assisting the caring role. The support that several young carers described as needed could be considered multifunction and whole family: providing help for the person they care for (and so reducing their caring role and improving the life of the care recipient) and help for themselves. The following quotes are some examples:

This place can help you and the person you care for!

Young carer annotation

Help us as well as helping him.

Young carer annotation

Like I don’t think it should be just me who gets to speak to somebody. I feel like maybe my mum could be able to speak to someone too.

Young carer quote from discussion

Care recipients also felt that support for the family as a whole was needed, but often lacking:

The service would look at the family as a whole.

Care recipient annotation

A family support worker who works with myself & children, helps with everything.

Care recipient annotation

Young carers and the people they support experience individual barriers to seeking and accessing the services and support they need, value and find helpful

Five main subthemes were identified by participants under the theme of individual impeding factors. These were ‘material resources’; ‘competing priorities’; ‘psychosocial factors’; ‘self-determination’; and ‘service and support literacy: individual’.

Young carers and the people they support experience contextual barriers to seeking and accessing the services and support they need, value and find helpful

In the BMHSU, contextual factors include three main themes: care policy, care financing and care organisation. Some subthemes, such as availability, affordability, or accessibility cut across these overarching themes.

Signposting and linking to support

Practitioners agreed that effectively linking people to useful support was often more complicated than simply letting them know it exists: ‘[s]ticking it on a website is probably not going to work’.

For signposting to be appropriate and helpful, the young person needed to be able to talk openly. This required a context of trust and was easier when a relationship with that person already existed. The likelihood of a young person engaging with a service they were referred on to could be increased, if initial introductions were handled together with someone they already trusted:

I think sometimes when a young person has built up that trust with you, knowing that then you’ve got a trusting relationship with the other professional, that other agency just really, really helps them as well.

This was also seen as a helpful strategy for adult care recipients:

We’ve got experience of a fabulous staff member who’s left us now, who did all the substance misuse work, who would literally walk through the door with an adult.

Hands-on and practical approaches were shared:

We can maybe go to their house and we can get on a bus or a tram with them and help them get to their appointment.

Support was also provided by completing paperwork together with the person seeking support. Helping people find out about and apply for the various grants and benefits could be crucial, and there was frustration at this being so difficult:

A lot of the time it’s so complicated… [they need] somebody to be able to advocate on their behalf and support them to – making sure they are getting everything that they’re entitled to, which will ease those financial worries.

The point was made that sometimes signposting might be used when advocacy was more appropriate:

It’s about you, as a practitioner, having the right training and guidance to be able to do some of that stuff yourself, to advocate for that young person in a meeting at school about the fact that I don’t want your detention because I’m late. And I might need to look at my phone because my mum’s poorly.

Assessment was cited as the way to find out what young carers were doing and what they needed. However, in the context of the challenges of service capacity it was also suggested that sometimes help was relatively simple to provide, and a young carer could be gently encouraged to make use of existing school resources without the need for an assessment. Where appropriate, this would address an issue raised in What is good or not good about existing services? What can be improved? about participants disliking filling in forms which appeared to have no purpose or did not lead to any support.

Practitioners appreciated the importance of adapting approaches to the individual:

We all intake information in a particular way that’s personal to us. So on our referral form, we would really ask young people about what works for them and then work with referrers to try and give that information in a way that’s very personalised and adapted to that individual.

There was acknowledgement that more could be done, if capacity allowed, to keep updated local service directories, or a ‘one-stop shop’ for the public, and to be clear about what was on offer: ‘I’m thinking, is there something we could be doing more to actually tag certain activities that might be supporting actual young carers?’.

On-call and ongoing support/changing your mind

The issue of young carers and their families turning down, or not accessing, support that might be beneficial, was familiar to practitioners, who discussed ways to allow people to change their minds. For example, one practitioner said they could not keep people on the waiting list forever, but would say ‘we’ll just hold that for a few months and put the ball in your court. Have a little think about it’. In response to this discussion, one practitioner wanted to emphasise strongly the importance of universal services in schools: ‘Because they will be there before, they’ll be there during and they’ll be there after’.

As well as finding ways to re-offer support and to ‘check in’, the importance of enabling families to access support from other sources, including informal sources and from friends, was acknowledged.

We discussed the idea raised in focus groups that it would be good to have an ‘on-call’ number, so that carers could get in touch when needed, even if perhaps they had turned down support previously. Some agencies already felt they provided this type of support, for a while at least; another thought it was a good idea, but saw dangers if it was not properly commissioned, funded and included in contracts:

It would need to be properly funded and there would need to be some kind of a rota arrangement and proper handover and that kind of thing. Because it could cause harm to the support workers, but also could cause harm to the young people if there wasn’t a good connection between information sharing.

Some practitioners felt that it seemed like a good idea in principle but considerations of the feasibility of offering ongoing support were usually bound up with capacity issues:

We’re a very, very small team covering a huge area. But empowering that family to recognise, if things are starting to slip or go downhill, actively seeking out that help, whether it is through school or the GP or the local mental health service.

Some practitioners had more philosophical objections based on the wish to foster resilience:

It’s an issue that’s faced by everybody, this need for ongoing support when it’s needed and easy to access. That is massively challenging and I suppose one of the ways that we’ve tried to address that around parental mental illness is to really just try to empower the family to support one another, whilst also connecting the young people with their communities.

Nevertheless, there was also a challenge to the idea that it was resource-intensive to leave ‘cases’ open, by allowing future follow-up if needed. This sort of availability could go hand-in-hand with empowerment:

In my experience, usually, over the course of that year, it’s very rare that we have people phoning up all the time. Sometimes you might think, as a worker, maybe that’s leaving it open to people wanting to contact you all the time. But I think if you’ve been very clear in those sessions about what they’d like to achieve and understand that that has been achieved through the course of them sessions, then it’s nice just them knowing that they’ve got you at the other end of the telephone.

Support that reduces the young person’s caring responsibilities

There was agreement that some adult services did not consider the child’s caring role: ‘When adult mental health services are working with the family, I find that often the children are invisible’.

In one workshop, participants talked about conversations that did take place between children’s and adult’s services around how adult social care services can meet needs of the young carer. Assessments that started with the young carer, one participant told us, included a question: ‘Do I need an assessment to adult social services?’

In one group, family group conferences were discussed as a solution to identifying support which reduced young people’s caring responsibilities. Empowering families to make use of other resources, including peer support, continued to be a theme in this discussion. We were told how one service worked with young carers and their family to identify their support networks (family, friends and neighbours) and make sure the young carer knew where to go if a service was not available.

Some practitioners felt that reducing caring was not always the key goal:

We can’t take their caring role away completely, and nor would we want to, because that’s the thing that’s part of them. But it’s just being able to build that resilience so that they can cope, and if things are going wrong, they know where to go in the future.

This service set up safety plans with young carers so that in emergencies, responsibility could be moved away from the young person:

That’s really been effective in a lot of cases where that young person would be trying to manage things…they’ve got a little child-friendly step-by-step plan and then a written plan with emergency contacts.

These plans included access to a local authority all-hours emergency contact, which could also be accessed by the care recipient via an alarm system.

Reducing the young carer’s responsibilities was raised in relation to childcare; it was commented that young carers often end up spending a lot of time looking after siblings (where the care recipient is the parent) and that sometimes services could intervene:

It is about having those difficult open conversations sometimes with them as a family. Because that young person might not want to upset the person that they care for by saying, ‘I don’t want to do that,’ or, ‘I’m not comfortable.’ And that’s our role, as advocate, then, to help them with that.

Support that considers the whole family

The need for, and challenges of, working with the whole family were recognised, alongside an acknowledgement that not all practitioners needed to take this approach, and some could work effectively with individuals.

I really believe strongly in both/and, both family work and direct work with young carers. Young carers need that space away from their parents as well. So that would be my last message, I think, really.

Assessments were again cited by one participant as an essential way to do this:

If you don’t do a young carers’ assessment, you’re not working whole family, you’re not able to work holistically. Because if you’re not physically doing the young carers’ assessment, how do you know what the young carer is doing? And therefore, are there any hidden needs for that adult?

One service provider told us about a project for parents with mental health problems, where they invited a group of families to attend a workshop together. There were fun activities alongside facilitation for parents and children to hear from each other. The children, separately, made videos about their situation which the parents watched; this could have a powerful effect on parents (‘they were gobsmacked!’). Parents were supported to consider what was and what was not appropriate for children to know and do, and how they, as parents, might support each other.

We have seen in other chapters how there could be conflicts within the family, or differences of opinion about needs and possible solutions. This was another way family group conferencing could help; although often used with families in crisis, in one site, the approach was now being used by trained facilitators working at a more preventative level:

It’s a really restorative way of getting a family around a table – not a table, they don’t use tables. But the idea is to get them as a group when they’ve identified, whether it’s a neighbour, friends, anybody they want at the meeting. And it’s basically owned by the family, the family come up with their own plan, and it’s usually there has to be a referral from a practitioner, but people in schools can refer in.

The way the model was being used seemed to address some of the concerns our young carer and parent participants had raised about everyone in the family being supported to have their needs and views considered:

This model is working really well for children/young people that don’t meet that threshold where it’s lower down and they want to bring the family together to come up with a plan. But the children are all given their own advocates, so it’s really well supported.

The approach could help identify what was important to individuals in the family, and how particular needs or wishes could be met, including things as simple as enabling a child to attend a sports club by having a relative cover caring duties.

Not all practitioners had access to such a service however, and eligibility barriers were cited; family group conferencing was not always available to use in a preventative way due to different local resource-use decisions. However, there was much agreement that, with the right resources and training, the approach would be beneficial to use in-house, for example in young carers’ services, to enable families to discuss needs and options and ‘take ownership’ of solutions. It was agreed that training a family group conferencing specialist for each agency working with young carers was a good idea. A word of caution from one participant was that you had to make sure the right individuals were trained: ‘I know our young carers workers here are amazing with lots and lots of skills. And there’s a but, and that but is it doesn’t necessarily mean that they’re skilled in working with families’.

Someone working with the whole family needed also to manage expectations:

Sometimes … the expectations are that somebody come into the family home and care for the mam 24/7. That’s not going to happen, it isn’t. It might be a wish…So it’s about being able to break that down.

Other services appeared to provide similar support where they brought in the whole family to discuss issues and solutions, sometimes with other services too, but ‘[w]e would always have a meeting with the family present. We would never do a professionals-only meeting’.

One school aimed to put support in place for parents and guardians when they identified that a child was a young carer. Schools were seen as increasingly bearing the brunt of lack of sufficient other services, now needing to support whole families:

I’ve noticed that schools seem to be taking on more and more and more of that sort of whole-family support. I’ve noticed that it is that you are the first port of call, really, and the schools are just taking on masses of support. There isn’t those services out there and it all tends to fall on schools. As I say, I don’t know how you do it.

Someone who listens, understands/building relationships and trust

In this section, we concentrate on three key challenges; navigating issues around being the trusted individual versus being the person with the right expertise; people’s fear of service involvement; and involving the young carer in approaches to support. Young people often developed trusted relationships with particular practitioners, and that could be crucial to support being effective but could also create challenges.

Involving the young person and their family

One participant talked about, when there were child protection concerns, involving the child in those conversations in school, to demystify the processes: ‘Being honest and open and involving the child, young person, with the process is absolutely the way forward’.

There was a discussion around practitioners needing to listen more:

As adults, we often think we know what needs to happen. And it’s so far removed to what the child or family actually want. I think as professionals we see a huge picture and actually it might be something as simple as, I don’t know, coming to school at 9:05. That might be all that’s required, but I think as professionals, over the years it’s been instilled in us to do to families rather than let them. I think that it’s key that the families and the young carers take control and we should be the ones then – I think that in itself, there are some professionals that will really struggle with that.

This could, it was felt, be straightforward:

Yes, it’s like we generally overcomplicate things whereas, like you say, it’s a simple question, ‘What do you need?’. And it might not be a massive referral to someone that they don’t want to speak to…. sometimes it’s as simple as, ‘She loves reading but we don’t live near a library and we can’t afford books.’ ‘Well, we’ve got a ton of books.’ ‘Brilliant.’ ‘I’ll pop some in the post.’ And sometimes it’s not simple, but it’s the way you ask things and the way you involve the young carer and the family, absolutely.

Practitioners described successful approaches, being clear and open with the young person, and being led by them in thinking about aims and solutions:

We’re very clear with young people when they start about what it’s going to involve. It’s all completely young person-led, they kind of set themselves some achievable goals. Anything that they’d like to work on in those six one-to-one sessions.

But limited numbers of sessions were recognised as barriers given the difficulty of relationship building:

Sometimes it will take us two, three sessions just to build up that trust before they even feel capable or confident enough to talk about their caring role. That can be really, really difficult and a massive challenge.

An organisation in one site described involving young carers in service design, working closely with commissioners. They explained that this was possible only because nobody else was bidding for that particular contract, and this meant the organisation could involve both young people and commissioners in developing a creative and flexible approach. This way of working together with commissioners to develop a service was described as ‘less performance managed’ and more cooperative. Another service had involved young carers in ‘co-production’ work, considering how Care Quality Commission quality markers for supporting carers in general practice could be improved to be more relevant to young carers.

Another practitioner recommended the close involvement of commissioners:

Just a little bit of advice around something like that. If you’ve got a great service like that, that is reducing responsibility of care, have a steering group and have somebody from commissioning sat on that steering group, because then they can really, really hear.

Commissioners who get to listen to young carers may be better able to support the provision of appropriate services.

Another aspect of involving young carers was in giving them appropriate and useful information about the care recipient’s condition. Although parents sometimes tried to keep information about the illness from children (particularly in relation to mental illness), practitioners said research suggested having greater understanding of conditions could be reassuring for young carers:

It’s a way of reducing the need by actually just empowering families to be able to talk together and to understand each other’s needs and to understand what works.

Following discussion of our results, and discussion between the attending practitioners, a strong take-home message was the need to listen to young carers and their families:

I guess the central message is asking a young person and asking their family what they want. There’s a million and one things that professionals could do or could signpost to, but if it’s not relevant to their family, if it’s not what they want, I guess that’s the biggest barrier, isn’t it?

Summary

Table 5 summarises practitioners’ perceptions of the barriers and facilitators to addressing the five key themes we took to the workshops relating to what young carers and parents say are, or would be, characteristics of valuable services. Involving young carers in discussion and decision about needs and solutions is included as a sixth theme. This was also a strong theme from the work with young carers and parents and was a theme across the discussions with practitioners. In Table 5, where the facilitator at least partially addresses a mentioned barrier, they appear on the same row.

A further implication of the above findings is that services would benefit from practitioners having more opportunities to meet and discuss; one case study area already had a professionals meeting a couple of times per year. Other areas attending said they would like to do the same. These may have been a particularly engaged group of practitioners, given that they were prepared to give time to being involved in the research and attending a discussion group. We do not see this as a limitation per se. Nevertheless, it might be important to speak to some of the practitioners who are struggling to provide the sort of listening, understanding, person-centred and flexible support that appears to be needed, to see if there are additional barriers we have not identified.

Co-developed support planning

Co-developed support planning refers to assessment and care planning that is done in partnership with the young carer (and their family). It is an individualised interview, and its principles are outlined in the 2014 Care Act6 which sets out that the process should be person-centred and that outcomes should be considered holistically, reflecting peoples’ wishes and feelings, their needs, values and aspirations.

We identified one source with cost information from a 2015 Think Local Act Personal report,99 which was produced to support the implementation of the 2014 Care Act. It presents costs in four categories by which support planning can be delivered: in-house by social work teams; in-house by a discreet team; outsourced process of assessment and support planning; and outsourced process of support planning only. The information refers to adult social care. The report also concludes that evidence on cost-effectiveness is patchy but that some views and experiences from local authorities suggest that separating out support planning from assessment, and outsourcing the support planning to user-led organisations can be cost-effective, as it might achieve better outcomes by encouraging creativity in planning and drawing more fully on informal support and community resources. Outcomes might be measured using tools such as the Personal Outcomes Evaluation Tool. The report acknowledges that data available about the costs of support planning is lacking and that little detail is presented by local authorities. However, the report presents a summary of costs across a number of local authorities. Averages seem to range widely from £101 for a standard support plan carried out in-house by a community care worker, to £328 for a more complex support plan carried out by a social worker. The report explains that these costs are based on an estimated cost per hour, based on current average salaries for social workers and support workers. These costs are similar to those quoted for outsourced support plan services, which range between £10 and £18 per hour. However, at our workshop, these estimates were considered to be very low in comparison to current costs. This suggests that the report may not include many of the relevant salary – oncosts and overheads. In addition, the source is dated, and salaries have increased since 2014–15. 99

At the workshop, it was discussed that the costing information was not sufficiently relevant, and the actual costs were underestimated substantially. It was discussed that the actual hourly rates were much higher than those reported in the source. In addition, the ongoing support costs would be much higher than reported in the source, and for most young carers the ongoing cost of support planning exceeded the costs of the assessments substantially. It was also discussed that the hourly rates strongly varied between regions, which also needed to be considered. Furthermore, the variation between individual young carers was likely to be even higher than reflected by the cost ranges in the report. The challenges of implementing support plans with the young carer and families could be substantial (e.g. when the person cared for did not have full recognition of their situation).

An evaluation of a training intervention to increase user and carer involvement in mental healthcare planning, highlighted the challenges of implementing high-quality, co-developed care planning. 100 Costs included the costs of healthcare professionals’ time to attend the training, the trainers’ time to deliver the training, consumables and room hire. Unit costs were applied where relevant and costs refer to cost year 2015/2016. Costs of delivering the intervention were set against any gains in quality-adjusted life-years (QALYs). Overall, the training intervention was associated with a net loss of £54.00 [95% confidence interval (CI) −£193.00 to £84.00], with a net QALY loss of –0.014 (95% CI −0.034 to 0.005), meaning it was not cost-effective.

Whole-family approach

A whole-family approach refers to a range of interventions that specifically work with the family as a whole, rather than just the child. Examples include family-focused assessment and care planning, family group conferencing, Team Around the Child and KidsTime workshops.

We identified three studies that included information about costs and benefits of interventions that followed a whole-family approach. The cost of conducting a family assessment in CAMHS prior to an intervention taking place was £700 per child. 101 The Early Intervention Foundation published a report in 2018 which found that the costs of family group conferencing in the borough of Camden were between £1200 and £1500. 102 An evaluation of KidsTime workshops by the London-based Anna Freud Centre, found that an average costs of a monthly workshop at their three sites in Camden, Hackney and Islington, was about £14,000 per year,103 although the report does not state how many families benefit from the service in total. A further evaluation by Spierling and colleagues in 2019101 found that KidsTime workshops cost £2000 per family, per year, on average but this evaluation did not specify the year in which data were collected. A report by the Institute for Public Care104 using data from cases from 2011 to 2013 showed that costs for providing Team Around the Child interventions ranged from £2302 to £15,175 per case. While the eligibility for interventions was not restricted to families in which parents had long-term care needs, most interventions were provided to this population and thus are relevant to young carers. Estimated benefits that were reported in the Institute for Public Care ranged widely, from £10,900 to under £1.4M. Net benefits ratios, ranging from potential cost savings of £5 to £91 for every £1 spent, were calculated based on individual family stories and did not use robust methodologies. They referred to averting costly long-term consequences such as child removal and instances where a child may require ‘looked-after’ care arrangements over their childhood period. However, the report did not include counterfactual examples. For example, what would have happened without the intervention and assumed zero additional cost occurred after the intervention.

At the workshop, individuals discussed that a challenge to costing family assessments was that they were done very differently in different localities, organisations and services. Moreover, there was no guidance or standards on how family assessments should be done. This also meant that such assessments often took place initially without the knowledge of parents’ problems. It could take several weeks of working with parents and children, establishing a trusting relationship, before the presenting issues were ascertained. Difficulties in identifying young carers was considered an important barrier to targeted whole-family approaches.

A key challenge towards establishing economic evidence is that most benefits occurred in the future and that it was difficult to establish those as part of regular evaluations with relatively short time periods. For example, there is evidence highlighting the large costs to the government and society if children or young people caring for someone with mental health problems are left unsupported during their childhood. This includes the costs to adult mental health services, as often young carers need support because of the emotional impact of caring. 26,55

The issue of costs and benefits occurring to different departments was discussed, as it was mainly children services paying for whole-family interventions. Adult services potentially benefitted from this, through potential cost savings (although those were difficult to evidence). Silo budgeting was a key barrier to establishing the economic case for interventions in this area. It was also discussed that the lack of organisational and senior manager buy-in was driving up the costs of implementing interventions substantially.

Signposting and information

Since signposting and information could refer to a wide range of services, we focused on social prescribing, which has been scaled most widely in recent years in England although we were unable to identify evidence that referred specifically to young carers.

We identified two sources which reported on costs and/or benefit of social prescribing schemes. 105,106 The 2020 Unit Costs of Health and Social Care referred to the Rotherham Social Prescribing pilot, for which the average cost of receiving social prescribing, through referral to funded voluntary and community sector organisations, was £570 per person. Estimated cost savings per person ranged between £265 and £385 and referred to reductions in the use of accident and emergency and other health service use (it is expected that as people are referred to and access more appropriate services earlier on, they are less likely to use more intensive and costly health services). Estimated return on investment, which is calculated by dividing benefits (‘returns’) by the costs of the service or support, ranged from a negative return of £0.5 per £1 pound spent, to a positive return of £3.4 per £1 spent. All the costs included in this report were updated to 2019/2020 levels, by using Prospective Payment System inflators.

At the workshop, it was discussed that most evidence on social prescribing referred to adults and that there are many other (potentially more appropriate) ways to signpost and provide information to young carers. Quantifying the benefits of signposting and information would be extremely challenging, and it was not possible to assume that benefits for adults applied to young carers, who had very different health and wellbeing needs. It was discussed that the lack of knowledge about appropriate support could have devastating consequences. While recently collected data from the school census could potentially address some of the existing evidence gaps, generally conducting economic evaluation in this area was considered very challenging due to the many ways by which signposting and information provision could be conducted. It was also discussed that providing information is quite different to signposting to services, and as such, these approaches might need to be considered separately in the analysis.

Designated (lead) person in schools

A designated person in school refers to a teacher or other professional employed by the school who is responsible for managing the school’s provision for young carers and their families and serves as a main contact for providing advice and support.

We identified one briefing paper from Barnardo’s charity,107 which made the case for having a designated mental health support team in every school, and a report by Pro Bono Economics on the cost and returns of a Place2Be counselling programme. 108 For the Place2Be cohorts spanning 2016–2021, the average cost per child was £1100, the estimated net benefit was £7700, and the estimated return was £8 for every £1 spent. Benefits referred to long-term economic benefits linked to improvements in children’s mental health (measured with the Strengths and Difficulties Questionnaire), such as highly hourly wage and increase chance of employment, reduction in truancy and exclusion.

At the workshop, the group discussed that having a designated person in schools was highly valued among young carers and that understanding the economic case would be very useful. The choice of designated person varies between schools, and currently there is little agreement as to the specific roles and responsibilities of this person. Depending on roles there were likely to be additional activities that had costs attached to them, such as organising young carers groups or activities. The group debated whether the designated person would come from existing school resources, since it was part of what school should be delivering, or whether additional resources were needed to ensure that schools were able to support the person to do the role well. This might include introducing a pupil’s premium for young carers (similar to a premium linked to special educational needs). Furthermore, there was no agreement on whether the designated person would get additional payments for taking on this role, and whether there were costs of additional training that needed to be considered. From an economic perspective, there would be opportunity cost attached to having a designated person since the time spent on this role and activities could not be spent on other things that would generate value to the person and school. The benefits of having a dedicated lead could be substantial if it led or is linked to comprehensive support that enables the young person to stay in school. With regard to current provision and implementation challenges, this strongly varied between localities. For example, in regions such as Cambridgeshire, every secondary school had a designated lead. Challenges to the implementation of a lead person role included staff turnover and existing school priorities on safeguarding and special education needs.

Participant representation

We took several steps to optimise participation and inclusivity. This entailed extensive outreach and engagement work by partner organisations before the project began and during the active recruitment phases. Recruitment materials were co-developed with public advisors (young carers and social care practitioners) to ensure they were age-appropriate, culturally sensitive and appealing to a wider range of carers. Young carer project workers were directly involved in study recruitment. Recruitment of a wider range of young carers was facilitated by this trusted relationship and the local knowledge of key target groups. A barrier to participation for some young carers can be parental consent. The experienced project workers facilitated this process. As described elsewhere, methods and research materials were co-designed with young carers and practitioners working with young carers, increasing active participation in the research data collection. Research materials were also designed to be age-appropriate and culturally sensitive. The research team were experienced in working with vulnerable adults and children, and learnt further skills from the social care practitioner team member who had extensive experience in working specifically with the study target groups. This helped improve inclusivity and accessibility. Project workers in each locality working with young carers, care recipients and marginalised groups co-facilitated focus groups and provided support where needed.

Participants were made aware they could step out of the focus group at any time, with a support worker available to accompany them. Project workers also helped organise ‘cool down’ activities and ‘ice breakers’. Before each session began, participants were invited to consider and agree ‘group rules’ which would help them feel comfortable and willing to share information in the session. Group rules were jointly made by participants, supporting staff and the research team and all agreed to abide to them. Clear information and reassurance about confidentiality, anonymity and the use of the information being gathered was provided during recruitment and data collection. We were flexible about timing of focus groups; arranged accessible focus group and interview venues (with options for interviews online or by phone); and arranged transport as needed. The provision of transport was important to participation in all localities. We offered to cover the costs of replacement care and/or support workers to attend; neither were however used. We also offered the option to have information sheets in easy read, languages other than English and the use of an interpreter for interviews. In the event neither were needed to enable participants to engage in the research. Information and consent forms were also read and further explained to participants when needed.

As a result of these activities and actions, we were able to recruit young carer participants from a wide range of experiences and communities. This included young carers from ethnic minorities; neurodiverse or disabled young carers; those supporting care recipients around mental health and substance misuse; urban and rural, small town and city young carers; and carers of different ages, genders, socioeconomic status and home and caring circumstances. We also gained participation from a range of care recipients, although the latter not as diverse as the young carer sample but also not as large. Young and young adult carers and the people they support are already an under-represented group. We also recruited from particularly under-researched groups, such as from under-represented geographical regions such as the North West of England, or care types such as caring for someone with severe mental health or addiction. Accurate statistics on the young carer population are difficult to obtain. However, we were not aiming to be representative of the young carer population as a whole but instead to ensure we had participation from young and young adult carers with a wide range of experiences and circumstances. This we achieved. As described elsewhere, we were not able to recruit from very under-represented groups of young carers such as Roma and Traveller or asylum seekers and migrants. While these are a small proportion of the population, we would have liked to have included them and hope that future research will be able to do so, perhaps by ensuring researchers from these communities as part of the research team.

Reflections on the research team and wider involvement

The research team comprised academic researchers, voluntary sector social care practitioners who are often under-represented in social care research teams, and young carer advisors, who are also often under-represented. There was a range of experience and expertise across the research team and different expertise and experiences complemented each other with, for example, the social care practitioners being more expert in working with the study target groups and public advisors, and the study lead being more experienced in leading academic research studies. There were two research assistants linked to the project at different times. They contributed skills around literature review and additional ways of engaging with young carer advisors, including utilising technology for this purpose, as well as bringing new perspectives. Within their time allocation on the project, junior members of the team were encouraged to observe and take part in all aspects of the study including advisory processes, data collection, analysis and outputs. The research team were experienced in working with vulnerable adults and children and learnt further skills from the social care practitioner team member who had extensive experience in working specifically with the study target groups. Although none of the research team had direct experience of being a young or young adult carer, it was assisted by the young carers advisory group and a study steering group who did bring that experience and perspective.

The young carer advisors in the project included carers who were disabled, neurodiverse and those from ethnic minorities and under-represented socioeconomic statuses, as well as representing a wide range of caring circumstances and geographical areas. The role of public involvement is described in more detail in the section on public involvement below.

Aim of public involvement in our study

The aim of public involvement in the study was to ensure that from the start, and throughout, the research was co-produced with the people for whom it was intended that the research findings would have the most impact. This was young and young adult carers, the people they care for, and health and social care practitioners from the statutory and voluntary and community sectors who are involved in identifying, supporting and funding services for them. Their expertise and voice were important in ensuring the study was relevant to the experiences of young carers and their families.

Public involvement methods

Engagement and outreach activities were a key element of the study, enabled by the active engagement of young carer organisations in the study’s four localities. Their extensive local knowledge and established networks, both with young carers and other professionals, were key in reaching the number of participants who engaged in the research through focus groups, and practitioner workshops. They were particularly important in engaging with more marginalised groups in their areas and enabling us to recruit from the wider body of organisations and groups within their localities.

We used a number of advisory and reference groups to inform the study as well as a range of methods. The groups included:

• Young carers advisory group: Young and young adult carers were recruited from the four localities; each young person had been a recipient of services provided by the local young carers organisation. The advisors represented a range in terms of gender, ethnicity, socioeconomic circumstances and caring situation, as well as geographical area and type. The group were recruited in February 2021 with the first meeting held online in March 2021 to co-design the focus group topic guides. The second (hybrid) meeting reviewed and sought the young people’s reflections on the findings, co-designed research materials for practitioner workshops, and established which job roles to invite. The third meeting, held online, helped co-produce the research briefing paper to be used in the dissemination events and to discuss who best to share the findings with. A further in-person meeting in January 2023 helped co-produce other outputs such as the animation (REBIAS-YC). Each advisory group member received a voucher for their participation and all expenses were paid for face-to-face meetings, including two meetings at the London School of Economics. Project workers from the four locality young carers services supported the recruitment and engagement of the advisory group. They were known and trusted by the young advisors and were able to make the local arrangements to support the young people to engage.

• Study steering group: This included social care professionals working with young carers and their families as well as policy-makers and other academics. These were recruited from outside the four localities to inform the development of the study, including feedback on materials and the findings. The steering group met in February 2021, May 2022, and February 2023.

• Young carers organisations group: The four locality based young carers organisations have been highly involved in recruiting and supporting young carer advisors; recruiting and supporting research participants; and co-producing the study’s research and action events. The research and action events took place in March 2023.

In addition to the above groups, we also had the following additional support for public involvement:

• The social care practitioner co-investigator who was able to bring her knowledge to research material design, methods, analysis and outputs. Her expertise in the active participation of young people in service design and delivery, as well as research, was of particular note. She also led on the development and delivery of the research and action events.

• We held a workshop in January 2023 to discuss cost implications of our findings with young carer professionals. (See also Cost analysis.)

Practitioner involvement in engagement and recruitment of participants, especially of more marginalised groups, was core to the study and fundamental to its success. The study’s collaborating organisations have developed a range of strategies to reach young carers and their families, which the study used and built on.

These included:

1. Co-development of recruitment materials and recruitment

   Materials for the study were co-produced with the young carers advisory group, young carers organisations group and the social care practitioner co-applicant. Their feedback informed the content and presentation of the materials, including the participant information and consent sheets, and the questions we asked in the focus groups and the way we asked them. As a result, we made changes to wording and presentation of the information sheet and consent form and to the question wording, prompts and methods used in the focus groups.

2. Culturally sensitive and targeted materials

   Young carers, while they share the experience of undertaking caring responsibilities, are from a diverse range of communities, family structures and cultures. To ensure that the focus groups and materials were accessible to as many young carers as possible, we benefitted from the advice and support of young carer project workers in the four localities. Their local knowledge of individual young carers, and of the wider communities within which they live, enabled them to support participants to engage. However, this approach has its own limits, being reliant on the four locality young carers projects to recruit as wide a range of young carers and families as possible. We explore this limitation further in the section on outcomes below.

3. Working closely with relevant organisations such as local community organisations and family support services in each of the four areas

   The four young carers organisations met regularly to share their expertise and to plan recruitment in each locality. The meetings also helped co-design the focus groups and plan which venues, times and participant groups would participate. This local community and young carer knowledge meant that the focus groups, while using a similar format and materials, happened in a space and place where young carers and care recipients felt confident and comfortable to speak about their experiences and to discuss issues including barriers to support.

4. Locally based social care practitioners contribute to outreach and engagement activities

   Locally based social care practitioners (project workers) were an important part of the study, both in terms of reach into communities but also in their knowledge and expertise in working with young carers and families. The presence of local project workers helped to develop a safe space, as they were able to support engagement and offer support if any of the issues triggered a response from participants. At the same time, the focus groups were led by the research team and emphasis was placed on safety and encouraging participants to express both what worked and what had not worked, or what had been difficult encounters with support services, including their own young carers service. The continued involvement of the locally based project workers enabled the dissemination events to be co-produced and led by young carers, fitting in with our overall public involvement aim: of young carers’ voices being central to the development and delivery of the study.

5. Providing clear information and reassurance about the information being gathered

   The information provided to participants was co-designed with young carer advisors, and the social care practitioner co-applicant who has experience of developing young people-friendly materials and resources, and other social care practitioners. The information sheet and consent letter were agreed by the participating young carers services who were able to explain the information to participants individually and as a group where appropriate. The information being explained by a trusted professional benefitted the study as the participants, and parents where consent was required, were confident to ask questions and to participate in the focus groups/interviews with a clear understanding of what was going to happen and that they could at any point withdraw from the study. The young carers services deal with issues of confidentiality on a regular basis and confidentiality agreements are part of the consent to engage with the services and this familiarity benefited the study.

6. Safeguarding procedure

   The safeguarding expertise of the local young carers services complemented the research team’s experience around confidentiality and consent from a research perspective. This enabled us to have in place effective safeguarding procedures. This included the presence of project workers who acted as support for the young people and families, in case any of the material being discussed was upsetting or potentially triggering.

Reflections on public involvement outcomes

Background

‘Communities of practice are groups of people who share a concern, a set of problems, or a passion about a topic and who deepen their knowledge and expertise in this area by interacting on an ongoing basis’. 120 Proponents of communities of practice, such as Millen et al. 121 or Wenger et al. 120 argue that they have multiple benefits for individuals (e.g. through professional development, knowledge acquisition and increasing confidence); the community of practice itself (e.g. through opportunities to share ideas and improved problem solving and decision-making); and the organisation as a whole (e.g. as a way of benefiting from past experience rather than ‘reinventing the wheel’, enabling benchmarking and fostering innovation).

There are many examples of communities of practice models being applied across different types of organisation and sector, including health and social care. 122–124 However, although we identified one review about communities of practice for family carers of people with Alzheimer’s disease,125 we did not find any published examples of them being used specifically with young carers or practitioners working with young carers.

Communities of practice have benefited from technological advances which have increased the speed and reliability of internet connections and the number of platforms over which individuals can meet (e.g. Zoom and Microsoft Teams). Online, or virtual, communities of practice have been shown to be helpful in reducing professional isolation among health and social care professionals, particularly in rural areas where opportunities for in-person training and professional networking are more difficult. 126 Unsurprisingly, the COVID-19 pandemic has created increased interest in online communities of practice. 127

While most published accounts are overwhelmingly positive, there have also been some criticisms. Key to this have been concerns about power and ownership. While communities of practice were originally presented as spontaneous, self-organising and fluid processes, characterised by small groups working in the same workplace or in close proximity,128 many host organisations have taken responsibility for creating communities of practice and controlling the way they operate. This may mean that power and ownership are vested in the host organisation rather than the community of practice itself. 129 Nicolini et al. 130 took a different stance on this topic by highlighting the risk that communities of practice could perpetuate power imbalances by defending experts’ self-interest or by delegitimising the knowledge of non-members.

Methods and participants

The design for the communities of practice evolved as the study progressed. This was primarily influenced by the COVID-19 pandemic which ended the plan for face-to-face meetings in partner organisations. Instead, we retained the plan of establishing three different communities of practice to capture different job roles, but switched them to an online format. The three communities of practice consisted of:

• carer workers engaged in direct work with young carers, offering one-to-one or group support for young carers or undertaking young carer assessments

• practitioners in other roles, such as early-help services or widening participation

• commissioners and managers.

We also decided to reschedule the communities of practice so that, instead of taking place at the same time as the main data collection, they would take place once it was almost completed. This was to help focus the discussions on topics that we knew from our findings were salient for young carers, care recipients and practitioners. Two meetings were held within the research team to discuss how emerging themes from the interviews with young carers, care recipients and practitioners could inform the communities of practice. This resulted in an outline plan shown in Figure 1.

FIGURE 1.

Communities of practice flowchart.

Recruitment took place in three ways. The first was via forums that were in touch with individuals and organisations working with young carers. These included the Young Carers Alliance and Making Research Count (a collaborative research dissemination initiative). The second was through the use of web searches to identify different organisations supporting young carers. The organisations contacted were selected to achieve variation in geographical location and type of organisation. The third was via social media on Twitter. While this resulted in multiple likes and retweets, not one person taking part in the communities of practice was recruited this way.

As shown in Figure 1, the format for the communities of practice consisted of five online meetings lasting 45–60 minutes, followed by a hybrid final meeting combining all the groups and to which participants in the practitioners’ workshops were also invited.

Table 6 shows the number of participants in each community of practice and their job roles.

There was some role overlap between the groups. Participants came from all sectors, including local authorities, national and local voluntary organisations, the NHS, and higher education. Each group held 5 online meetings, resulting in 126 attendances spread across 38 individuals. A final hybrid event bringing all the groups together was held in October 2022. Excluding the research team, this was attended by 30 people, 21 online and 9 in person. In addition, six individual or dyad interviews took place to discuss individual services with people who were unable to attend the meetings or to discuss individual services.

Discussion themes

Communities of practice as a way of sharing knowledge

One of the advantages of online meetings was the opportunity for participants to meet other practitioners from different parts of the country. This gave them the chance to share experiences and recognise the similarities and differences that they faced as practitioners. For example, one practitioner from a rural area highlighted the lack of public transport as a problem facing young carers, particularly when it came to attending social or group activities. By contrast, practitioners from London found that young carers were often reluctant to travel because of fear of knife crime. It was striking how often participants used the chat function in meetings to share experiences, including one moving moment when a member shared experiences of a safeguarding review involving a young carer. There were also examples where participants working in higher education were able to give advice about the systems in universities aimed at improving the numbers of young carers and other under-represented groups in higher education. The hybrid event was less successful at attracting in person attendances, highlighting how the COVID-19 pandemic has changed the way in which professionals interact.