Young Carers Whose Parent Dies: No Country We Found Counts Them

Several countries now count the children and young people who care for a family member, through censuses, school records and surveys^[1]. We found no country that counts how many of them go on to be bereaved of the parent, or anyone else, they cared for. The little research that follows them through a death, led by a 2026 UK study, describes young people who were unprepared for it, and who, when that person died, also lost a role and a routine^[2].

Some children are already carers when their parent dies. For months or years they may have helped with medicines, meals, lifting, appointments and younger brothers and sisters, often alongside school. When the death comes, their grief arrives in a household that has been organised around an illness, and the work that filled their days stops at once. Services for young carers tend to be organised around the caring, and bereavement services around the death. Throughout, “young carer” means a child or young person who provides unpaid care, usually for a family member who is ill, disabled or has a mental health or substance use problem; the definitions differ by country, and we say which one each figure uses.

How many young carers there are depends on who is asking

Young carers are counted more often than they used to be, but each count answers a different question. In England and Wales, Census 2021 found about 120,000 carers aged 5 to 17 in England and 8,200 in Wales^[1]. The Office for National Statistics cautions that the question wording changed after 2011 and that the census was taken during the COVID-19 pandemic, both of which may have affected how many people reported caring^[1]. England’s school census, which has recorded young carers only since 2022/23, identified 89,800 pupils in 2025/26, up 25,300 on the year before. The Department for Education warns that early increases are likely to reflect schools getting used to the new data item rather than a real rise, and more than half of schools recorded none^[3]. The two English figures come from different years and methods, so they cannot be compared directly.

Elsewhere the picture is similar. Ireland’s Census 2022 counted 4,759 carers under 15, up from 3,800 in 2016^[4]. Australia’s 2022 Survey of Disability, Ageing and Carers estimated 391,300 carers under 25, against 235,300 in 2018^[5]. In the United States, which has no official count, an analysis of the American Time Use Survey for 2013–2019 estimated about 1,623,000 caregivers aged 15 to 18, or 9.2% of that age group, but the yearly estimate ranged from about 364,000 to 2.8 million depending on how caregiving was defined^[6]. In Norway, 18% of young people aged 16 to 25 report having a caring role, according to a Health Directorate figure quoted in a 2025 review^[7].

None of these figures says who is being cared for, or whether that person later died, and several are survey estimates rather than counts. They do show that caring in childhood is common enough to appear in every country that has looked, and that the answer depends heavily on how, and of whom, the question is asked. The time each child gives can be considerable: in Ireland, 12% of carers under 15 gave 43 or more hours of unpaid care a week in 2022, twice the share in 2016^[4].

We found no country that counts young carers whose parent dies

The question this study set out to answer, how many young carers are bereaved of the person they cared for each year, has no answer that we could find. None of the census or survey releases above records whether the person being cared for later died, and we found no register study, official statistic or survey anywhere that follows young carers through a bereavement and counts them. Our study of how many children are bereaved of a parent sets out how those figures are made, and our study of data gaps covers the wider problem.

The two groups must overlap, most obviously where a parent dies after a long illness. In the United States, an analysis of the National Health Interview Survey for 2000–2007 estimated that 1.58 million cancer survivors lived with their children under 18, representing 2.85 million children, and that about 562,000 children were living with a parent in the early phases of cancer treatment and recovery^[8]. Many of those parents will not die of their illness, and not every child in such a family becomes a carer, so this is not an estimate of bereaved young carers. It shows only how many children live alongside a serious parental illness.

The one study we found that set out to describe this group directly, from the UK, did not try to count it. It surveyed 106 professionals working with current or bereaved young and young adult carers, and held focus groups with nine bereaved young adult carers aged 18 to 26^[2]. Between them, those nine had cared for and been bereaved of mothers, fathers, brothers or sisters and grandparents; five of the people who died had cancer^[2]. That is a small group, and its experiences cannot be generalised, but it is the most direct evidence we found.

Before the death, young carers are often unprepared and unseen

Qualitative studies from several countries describe what a parent’s serious illness asks of children, whether or not they are counted as carers. A review of 23 Norwegian studies of children whose parent had a serious physical or mental illness or a substance use problem found them doing practical tasks, occasionally taking jobs to keep the family going financially, and feeling love alongside guilt, anger and fear^[7]. What helped was at least one adult who recognised them; what got in the way was a lack of information and recognition, and silence within the family or from health professionals^[7].

That silence is often about the possibility of death. In a US study of 40 caregiving young people aged 10 to 20 with a parent who had Huntington’s disease, fewer than half were aware of their parent’s living will or health-care power of attorney. Among their reasons for not wanting to talk with their parent about the possibility of death were protecting the parent and the parent not being ready^[9]. In interviews with 17 people aged 15 to 35 who had a parent with cancer in their youth, most families had talked about the illness, but mainly about facts and treatment; the emotional impact was rarely discussed^[10].

The UK study of bereaved young carers found the same pattern at the end of life. Young carers struggled with “a lack of emotional and practical preparedness for death”, with the weight of caring, and with roles and relationships changing within the family^[2]. Hospice staff explained that the presence and needs of children and young people “were not routinely assessed in initial palliative care assessments, and were often invisible to community nursing teams who visit during the day”^[2]. Our study of support before a parent’s death looks at what hospices offer children more widely.

After the death, a role ends as well as a relationship

A review of 28 qualitative studies of young carers mapped their experience as a journey in three stages: encountering caregiving, being a young caregiver, and moving beyond caregiving^[11]. For young carers whose parent dies, that last stage begins with a bereavement, and the UK study suggests it brings losses that other bereaved children may not share. Its participants described the loss of the relationship and also “the loss of their caring role/identity”, alongside complex emotions and practical upheaval^[2].

Guilt came up often. The authors found it was tied to whether more could have been done, to relief that their relative was “no longer suffering”, to relief that the young person’s own responsibilities had ended, and to feeling happy again^[2]. One participant put it this way: “there’s also the guilt that comes from, even if it is only very brief, sudden relief that you’re no longer responsible”^[2]. Feelings like these can be hard to say out loud, and the same study found young carers had difficulty opening up and seeking help, and often lacked understanding from family, friends and schools.

The practical load did not end with the death either. Participants described arranging funerals, managing changes to pensions and benefits, and telling people and organisations about the death; two young adult carers were left living alone in the family home after a parent or grandparent died^[2]. Before and after the death, young carers struggled with school attendance and performance^[2]. One young carers service told the researchers it was “often advocating for young people in school and with teachers as they are often inflexible and not very understanding”^[2]. In the United States, youth caregivers were already less likely than their peers to be enrolled in school, and those enrolled spent less time on education^[6], so a bereavement can arrive on top of an education that caring may already have squeezed. Our study of school attendance after a parent dies covers the wider evidence.

Young adult carers face a particular gap. The UK study found that moving between education, work and unemployment created support gaps, and that recently bereaved young adult carers, especially those living alone or responsible for siblings, were at risk of “slipping through the net” if they were no longer in education or stable work^[2].

A few countries put duties in law; support has rarely been tested

Some countries have made it a legal duty for health services to notice the children of seriously ill patients. Norway, Sweden and Finland were the first to set out professionals’ duties when a parent is ill or dependent on substances, and Australia (2014) and Iceland (2019) have since followed^[7]. In Norway, amendments in 2010 required health personnel to attend to children’s needs for information and follow-up when their parent is a patient, with the parent’s consent, and required every specialist health service to have staff responsible for coordinating that follow-up^[7]. As the review describes them, these laws are written around children as relatives of a patient rather than around caring or bereavement as such, but they give services a clear reason to ask whether a patient has children, which is the first step to knowing that a child may be caring, and may soon be bereaved.

The evidence on what helps is thin. A 2026 scoping review screened 5,172 articles and found 15, describing six distinct interventions, that supported children aged up to 25 and their parents when a parent had a life-threatening illness; most concerned cancer^[12]. The interventions were well received, but the review found a particular lack of support for families living with progressive neurological diseases^[12]. We found no evaluated intervention designed for young carers after the person they cared for has died. Our study of what helps bereaved children covers the evidence on bereavement support in general.

What the evidence asks of us

The UK researchers called for “cross-sector changes, reflecting public health approaches” to improve formal and informal support for young people who are caring and bereaved^[2], and the Norwegian review called for public health initiatives that recognise these children’s contributions^[7]. In practical terms, the studies above suggest:

• Count the overlap. Statistics offices and researchers who already identify young carers, through censuses, school records or surveys, could record whether the person cared for has died, so that bereaved young carers become visible in data at all.
• Ask about children at the start of palliative care. Hospice staff reported that children’s needs were not routinely assessed^[2]. Asking whether a patient has children, and whether any of them help with care, costs little; the Nordic laws show it can be made a professional duty.
• Carry support across the death. Agreed handovers between young carer and bereavement services, so that a young person known to one is introduced to the other before support ends, would help close the gaps the UK study describes.
• Help with the practical tasks. Funerals, benefits, paperwork and changes in where they lived fell on young carers, some of whom were left living alone^[2]. A named point of contact, which the UK study recommends for recently bereaved young adult carers, would help most those living alone or looking after siblings.
• Give schools and colleges the information. England’s school census already flags young carers, though more than half of schools recorded none in 2025/26^[3]. A school that knows a pupil is a young carer is better placed to notice when the person they care for is dying, and to respond with flexibility over attendance and work.
• Fund evaluation. Support for this group has barely been tested. Funders could back studies that follow young carers through a bereavement and measure what helps.

Language: this piece uses plain words such as “died” rather than euphemisms, because they are clearer.

Why we're publishing this

Young carers have spent time, energy and often their schooling looking after someone they love. When that person dies, they are bereaved children like any other, and also young people whose daily life has lost its centre. The services that knew them as carers and the services that support bereaved children rarely see the whole of that. We publish this so that young carer organisations, hospices, bereavement services and schools can point to what is known, and to how much is not, when they argue for support that follows a young carer across the death. The case is theirs; the gap in the data is a finding in itself. This study is part of our research library on children bereaved of a parent.

How to read this data

The counts of young carers come from official sources: censuses in England, Wales and Ireland, England’s school census, and Australia’s national disability and carers survey. The US figure is a research estimate from a national time-use survey, and the Norwegian figure is a self-reported share quoted in a review. Each uses a different definition, age range and year, so differences between them mostly reflect method. Australia’s and Ireland’s rises between surveys are reported as published, and may partly reflect changes in how people answered as well as real change; England’s school census figures are in their early years and the Department for Education advises caution.

The evidence about young carers whose parent or relative dies is almost entirely qualitative. The main UK study combined a survey of professionals with focus groups of nine bereaved young adult carers, all aged 18 or over at the time. Their accounts describe experiences, not how common those experiences are. The US figures on children living with a parent who has had cancer describe exposure to serious parental illness, not caring and not bereavement. We found no study, from any country, that counts young carers bereaved of the person they cared for, or compares their outcomes with those of other bereaved children.

Use this data

Free to cite with attribution to Understanding Bereavement. Charities, schools, services and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This study summarises published research about groups of people for general information. It is not medical advice or bereavement support, and it cannot describe or predict anything about an individual child or family. If you are worried about a child or about yourself, please speak to a GP or another qualified professional.

Sources

1. Office for National Statistics. Unpaid care by age, sex and deprivation, England and Wales: Census 2021. ONS, 2023. ons.gov.uk/…/unpaidcarebyagesexanddeprivationenglandandwales/census2021
2. Harrop E, Abbott Z, Hopewell-Kelly N, et al. ‘I’m tired of justifying why my life has stopped’: a qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavement. Palliative Care and Social Practice, 2026. europepmc.org/article/PMC/PMC13172680
3. Department for Education. Schools, pupils and their characteristics, academic year 2025/26. Explore Education Statistics, 2026. explore-education-statistics.service.gov.uk/find-statistics/school-pupils-and-their-characteristics
4. Central Statistics Office. Census of Population 2022 Profile 4: Disability, Health and Carers – Carers. CSO Ireland, 2023. cso.ie/…/censusofpopulation2022profile4-disabilityhealthandcarers/carers
5. Australian Bureau of Statistics. Disability, Ageing and Carers, Australia: Summary of Findings, 2022. ABS, 2024. abs.gov.au/…/disability-ageing-and-carers-australia-summary-findings/latest-release
6. Miller KEM, Hart JL, Useche Rosania M, Coe NB. Youth caregivers of adults in the United States: prevalence and the association between caregiving and education. Demography, 2024. europepmc.org/article/MED/38785364
7. Ytterhus B, Hafting M, Vallesverd VU, et al. Children as next of kin’s experiences, practices, and voice in everyday life: a systematic review of studies with Norwegian data (2010–2022). Scandinavian Journal of Public Health, 2025. europepmc.org/article/PMC/PMC12012270
8. Weaver KE, Rowland JH, Alfano CM, McNeel TS. Parental cancer and the family: a population-based estimate of the number of US cancer survivors residing with their minor children. Cancer, 2010. europepmc.org/article/MED/20586037
9. Kavanaugh MS, Noh H, Zhang L. Caregiving youth knowledge and perceptions of parental end-of-life wishes in Huntington’s disease. Journal of Social Work in End-of-Life & Palliative Care, 2016. europepmc.org/article/MED/27938026
10. Geertz W, Inhestern L, Bergelt C. Parental cancer: communication, daily life changes and psychosocial support: a qualitative study of adolescents and young adults who experienced parental cancer during adolescence. BMC Psychology, 2025. europepmc.org/article/MED/40963152
11. Saragosa M, Frew M, Hahn-Goldberg S, et al. The young carers’ journey: a systematic review and meta ethnography. International Journal of Environmental Research and Public Health, 2022. europepmc.org/article/MED/35627362
12. Malmström N, Ozanne A, Nilsson S, Öhlén J, Jakobsson Larsson B. Support interventions for families facing parental life-threatening illness – a scoping review. Palliative & Supportive Care, 2026. europepmc.org/article/MED/41978251