Introduction

Providing care can negatively impact on children and young people’s education, employment, mental health, and social participation [1–4] with associated costs to individuals, government, and the health service [1]. Support for young carers and the people they care for is therefore crucial and England, where our study was conducted, has brought in substantial new rights to support for young and young adult carers since 2014, albeit with limited and variable implementation of some of those rights [5]. England is now seen as relatively advanced in terms of young carer rights [6]. New rights include to a young carer needs assessment which should take into account and seek to address whether the young carer is providing ‘excessive’ or ‘inappropriate’ care; impacts of caring on the young person’s wellbeing, health, education or employment; and whether any of the young carer’s needs for support could be prevented by providing services to the person cared for [7, 8]. However, very little research has been carried out in this English rights context on how those rights best translate into how best to support young carers, address their unmet needs, and prevent and/or mitigate negative impacts, especially from the young carers’ own perspectives. Previous evidence suggests wide-ranging support gaps [9, 10]; however this research took place in a different young carer support and rights context to our study, either because of the period when the research took place or the country context. In light of the evidence gap, the policy and practice context, and the impacts on young and young adult carers of providing care, we conducted a study to investigate what support young and young adult carers found helpful or needed. The study overall aimed to investigate the perspectives of young and young adult carers on the helpfulness of support received and what prevented support from being helpful; and what support was needed or wanted that they did not already receive (unmet need). These two different aims corresponded to different segments of the data collection (focus groups and interviews with young carers) and were analysed separately. The results of the first analysis, published separately, gave a comprehensive picture of how best to support young carers by improving existing services [11]. This current paper addresses the question of unmet need, and the analysis was conducted based on a different type of data emerging from the same focus groups and interviews, as will be explained in the methods.

The conceptual framework for this paper drew on two frameworks that consider the different possible goals of carer support practice and policy: (i) Purcal et al (2012) and (ii) Twigg and Atkin (1994). (See also Table 1) Purcal et al’s framework applies specifically to young carer service support and postulates three main goals of such support: prevention, mitigation, and assistance [12]. ‘Prevention’ in Purcal et al.’s framework refers to services that aim to avoid the entrenchment of a young person’s caring role by adequate support to the care recipient before the child takes on the caring role or to achieve a reducing or removing care by the child if that is already taking place. In Twigg and Atkin’s [13] framework on whether and how the statutory care system engages with carers, prevention aligns most closely with the ‘superseded carer’ model which aims to replace unpaid care with other forms of support for the care recipient. This can be to ‘ease the lot’ of the carer, including by helping them to stop providing care, and/or to increase independence for the disabled person [13]. ‘Mitigation’ in Purcal’s framework refers to support that reduces negative impacts of caring upon the young carer. In Twigg’s categorisation, this ‘mitigation’ model corresponds to ‘carer as co-client’ with needs of their own to be supported. The third main possible goal is ‘assistance’. Similar to Twigg’s ‘carer as resource’ model, this approach sees unpaid care as an available and free source of care and seeks to sustain that care. Interventions will therefore aim at ensuring that carers are supported and sustained in their unpaid caring role through, for example, information and peer support.

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Table 1. Guiding conceptual frameworks.

https://doi.org/10.1371/journal.pone.0310766.t001

Our research question was: ‘What do young and young adult carers aged 9–25 and the people they care for perceive to be their unmet needs for support?;?’ In line with standard definitions, we define carers as someone who looks after, or gives help or support to a family member, partner or friend who needs help because of their long-term physical or mental ill health, substance misuse, disability, and/or problems related to old age [14]. As is the case in this paper, young carers are usually defined as aged under 16 and young adult carers as aged 16–25. For shorthand, we mainly refer to both as ‘young carers’ throughout.

Methods

Recruitment took place in four localities in England which differed by regional and geographical type and socio-demographic characteristics. Participants were invited to take part in focus groups with an option to take part in an interview instead. The inclusion criteria were being aged between 9 and 25 and providing unpaid care. Participants were recruited through young carer organisations, schools and colleges. We worked with partner organisations in each locality to facilitate recruitment. These organisations had extensive experience and expertise of engaging with young carers and care recipients historically less likely to access services in their areas, enabling us to reach a diverse range of participants. We held 19 focus groups in total, one online and the remainder in person, and eight online or phone interviews. The resultant sample was 133 participants with a range of caring and life circumstances and socio-demographic characteristics. Forty were aged 9–11, 57 aged 12–15 and 36 aged 16–25; most of the latter were at the lower end of this range. Where we have information, 25 cared for a sibling, 46 for a parent and two for another relative. Some cared for more than one person. The people cared for had a range of physical and/or mental care and support needs.

Focus groups and interviews took place between 1/6/2021 and 31/5/2022. Focus groups were co-facilitated by the research team and local project workers. Informed consent or assent was sought from all participants and parental consent for children 15 or younger. Consent and assent were given in writing, except for online or phone interviews where verbal consent was given which was audio-recorded and noted on a paper copy of the consent form. Focus groups and interviews were guided by a topic guide, audio-recorded with participants’ permission, and fieldnotes taken. Focus group recordings were transcribed where possible; in many cases multiple voices and discussions whilst the activity was going on made this impossible. In-person focus groups were held in venues familiar to participants such as a young carer or local community centre Ethical approval was granted by LSE Ethics on 21 May 2021 (Ref. 1247).

We used a range of methods in the focus groups, co-developed with practitioners and young carers and informed by the available literature [15]. This facilitated an informal atmosphere and enabled a range of ways (verbal, visual, written, group, individual) for young carers to express unmet need, gaps in support, and preferred options for support. The results reported in this paper are part of a larger study which looked at what was helpful about existing support what could be improved [11], using a different segment of and methods within the focus group or interview to this current paper. This current paper reports on an exercise where participants—either individually or with the research team—were guided to 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 care for. Researchers discussed the activity with the young people whilst they were doing it, asked prompts, and took notes. In some cases, participants expressed a need for a service or support they knew existed because of information provided by the school or young carers organisations, for example, or discussion with other young carers including in earlier parts of the focus group. In other cases, participants described the support that would meet their needs regardless of knowing whether it existed, or they would describe the need it would meet.

To enable an informal atmosphere and safe space, we took advice from the study’s young carer advisors and from practitioners with expertise working with young carers. Support was provided by experienced young carer support workers. At the beginning of each group, ground rules for participants, support staff and researchers, such as keeping confidentiality within the group, listening and being respectful, were jointly discussed and agreed. In the focus group, we began with support worker-led ‘icebreakers’ and ended with a ‘cool down’ activity, both unrelated to the study topics. We then reminded participants of the information sheet with helplines as well as the availability of the research team and the attending support workers after the group. Focus groups lasted between 2 and 2.5 hours including time for food and breaks, icebreaker and cool down. Of the remaining time, activities overlapped but the exercise reported in this paper was one of three main activities/topics and made up approximately a quarter of the data collection time in the focus groups.

The overall approach for the analysis was reflexive thematic analysis [16], incorporating both deductive and inductive elements. This began with familiarisation with the data, including reading and reviewing annotated pictures, transcripts, and notes. An initial coding framework was then developed, structured around the conceptual frameworks [12, 13] and the research question: ‘‘What do young and young adult carers aged 9–25 and the people they care for perceive to be their unmet needs for support?. The initial coding frame thus had the following overarching themes: reduction or removal of caring (prevention or superseded carer); mitigation of negative impacts (mitigate or carer as co-client); assist in caring role (assistance or carer as resource).

We then gathered all data relevant to each theme. Themes were adapted in response to the data. For example, in Purcal et al, ‘mitigation’ services include respite or a break from caring. In our study, it became apparent during analysis that a break from caring provided more of a ‘prevention’ function by reducing the care provided. As a second example, mitigation in the original framework includes reducing negative impacts of caring; during analysis, ‘improving outcomes’ was identified as an addition to the ‘mitigation’ category. We also identified sub-themes within each initial themes. For example, the initial coding frame included ‘remove or reduce caring responsibilities’ as a theme; sub-themes included ‘to enable time and energy to pursue personal goals and interests’ and ‘mode of addressing need’. A further example was the sub-theme of awareness, recognition and understanding of young caring and of disability and mental ill health as an assistance to providing care; this aspect was not in existing frameworks. Themes and sub-themes were iteratively reviewed, informed by discussions on initial themes and sub-themes with young carer and practitioner advisors. NVivo12 software was used to organise data.

Results

Drawing on both Purcal’s and Twigg’s frameworks, the findings about what support was perceived as needed by young and young adult carers and what needs such support would meet are structured around the three main themes that conceptualise types of currently unmet support needs: (i) prevent, reduce or remove caring responsibilities (the superseded carer); (ii) mitigate the effects of providing care and, going beyond that, improve the affected aspects of young carers lives (carer as co-client); and (iii) assist the carer in their caring role (carer as resource). (See Table 2.) Unless stated otherwise, quotes included in the findings represent annotations from young carers on the simple representation of a young carer and the person they care for. All quotes are anonymised.

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Table 2. Unmet support needs: Themes and sub-themes.

https://doi.org/10.1371/journal.pone.0310766.t002

Discussion

Our study, with a wide range of young carers across England, adds to theory and evidence in four main ways. First, our findings add to the previously sparse research about what support is perceived as needed by young carers. Specifically, we gathered perspectives on needed support in a relatively advanced support and rights context (England, [6]); meaning we were able to ascertain what were gaps in implementation and what were gaps in policy. This distinction is key to improving young carer support. Second, we investigated the range of support that might be needed. Previous research has tended to focus on specific types of support need; however young carers and the people they support may have multiple needs and areas of their lives that are affected by providing care [1–3, 18]. Our study facilitated young carers to consider a wide range of possible carer-related support that might contribute to making their lives easier and as a result showed the multiplicity of support that is needed.

Third, we build on existing theory. As described in the paper, we made several adaptations to the Purcal framework in response to the views of young carers on what support they need and what roles it would fulfil. These include categorising breaks from caring as ‘prevention’ rather than assistance and the addition to the ‘assistance’ element of the typology of better awareness, recognition and understanding of young caring and of disability and mental ill health. Additionally, research to date on unmet need has generally only considered the perspective of people with care needs [19, 20]. Our study, showing that unmet need for care and support for the person with care needs can also be an unmet need for others in that relationship further makes the case for a conceptualisation of and research on unmet need to take a carer-inclusive, i.e. dyadic, approach in order to get a full picture of unmet need, how to address it, and the enablers and constrainers of addressing it [21]. For an even fuller picture, two other elements are important. One is the practitioners responsible for providing and delivering support who can help address unmet need but also may be impacted by it [22] and have their own constraints and enablers–a triadic approach may therefore be more useful. The other is the context in which caring and unmet need takes place, which includes the policy, funding, and societal context. The resultant ‘contextual triadic approach’ can be used to understand and address unmet need for support and, more widely, to other care need and caring situations.

In the past decade, England has seen advances in policy and practice towards young carers and we might have expected to see this reflected in our findings. However, we found that many of the same gaps in support remain. One example is our finding of the expressed need, currently unmet, for more mental, emotional, physical and practical support for the care recipient. More support for the care recipient or less caring, was seen in previous research in time or country contexts where there are, or were, fewer rights to support for young carers [10, 23]. Since that research there has been legislation in England that explicitly includes provision for services for the care recipient to support the young carer. Our findings, showing this unmet need persists, point to failures of implementation. Because some young carers in our study did receive services for the person they cared for [11], implementation appears to occur but be uneven.

In terms of mitigation of negative effects of caring and improvement of outcomes, young carers in our study expressed the need, currently unmet, for support with their mental health, emotional wellbeing, and education. This is consistent with previous research [10, 24]. We also found that young people wanted support that facilitated greater social connection for themselves; better relationships with family; and ability to take part in hobbies and activities. In our study, support to help them in their caring role–assistance–included support from peers with similar experiences and information and advice about the care recipient’s mental or physical health condition as some previous research has also shown [23, 25]. Again, that this support is still lacking despite policy and practice developments over the last two decades in England shows the entrenched and complex nature of unmet need for support among young carers. A further form of assistance identified in our study, which could be considered an addition to the Purcal et al. (2012) framework, was greater multi-agency awareness, recognition and understanding of young carers and disabled people and people with long-term mental or physical ill health.

Services and support for carers may have multiple functions, and unmet needs to be addressed can be multi-faceted. For those that are already providing care, such as the young people in our study, a reduction or removal of their caring responsibility may be needed to enable them to pursue personal goals and interests and prevent future negative impacts in conjunction with mitigatory actions to redress the impacts already incurred. Similarly, mitigation can take place alongside ‘assistive’ actions to help support the carer in their caring role. However, the assist function of services, or ‘carer as resource’, implicitly involves sustaining the caring role rather than preventing or removing it [13]. For many service providers, individuals and families, supporting the young carer in their caring role, addressing the very immediate needs of children and young people who have entered a caring role, and mitigating negative consequences may be a pragmatic response to the consequences of the care recipient’s needs not being met in other ways. Purcal et al. also make the point that whilst the most desirable service goal is prevention of young caring through adequate formal support for people with a chronic illness or disability, ‘mitigation and assistance-type services…can and do provide important relief and in some cases may be all that is required to prevent negative outcomes for the young carer’ (Purcal et al., 2012, p. 10).

Conclusion

Young and young adult carers expressed unmet need for services and support that would reduce or remove their need to provide care, improve the lives of the people they care for, mitigate against some of the impacts of providing care on their mental health, wellbeing, education, social participation and leisure activities; and, whilst they are still providing care, assist them in their caring role. Taking into account context of providing care and unmet need is also important. Rights to reduction or removal of caring responsibilities, prevention of caring and of impacts, mitigation and assistance are all present in current legislation but failures of implementation are resulting in persistent and uneven unmet need for support.

Acknowledgments

We would like to thank the many young and young adult carers and receivers of care who generously shared their experiences of services and other support with us. We hope that we have adequately reflected their views and voices here. We would also like to thank the young carer advisory group for supporting the study throughout and greatly improving it, ably supported by expert support workers. In alphabetical order young carer advisors were: (Brendon, Chloe, Jemima Dinning, Luca Vizor, Morgan Cooper, Rebecca, Thomas Atkin-Withers, and Yusraa Bibi Khan). We are also grateful to our study steering group and the young carer organisations who helped recruit and facilitate the data collection and supported the young carer participants to take part.