SPECIAL ARTICLE

Dharampal & Ani Emotional and mental health needs of young carers

18 Border R, Johnson EC, Evans LM, Smolen A, Berley N, Sullivan PF, et al. 23 Dunn EC, Soare TW, Zhu Y, Simpkin AJ, Suderman MJ, Klengel T, et al.
No support for historical candidate gene or candidate Sensitive periods for the effect of childhood adversity on DNA methy-
gene-by-interaction hypotheses for major depression across multiple lation: results from a prospective, longitudinal study. Biol Psychiatry
large samples. Am J Psychiatry 2019; 176: 376–87. 2019; 85: 838–49.
19 Howard DM, Adams MJ, Clarke T-K, Hafferty JD, Gibson J, Shirali M, 24 Harrington A. The fall of the schizophrenogenic mother. Lancet 2012;
et al. Genome-wide meta-analysis of depression identifies 102 inde- 379: 1292–3.
pendent variants and highlights the importance of the prefrontal brain
regions. Nat Neurosci 2019; 22: 343–52. 25 Liddell DW. Observations on epileptic automatism in a mental hospital
population. J Ment Sci 1953; 99: 732–48.
20 McGowan PO, Suderman M, Sasaki A, Huang TCT, Hallett M, Meaney
MJ, et al. Broad epigenetic signature of maternal care in the brain of 26 Hewitt R. Social stigma, stress and enforced transition in specialist epi-
adult rats. PLoS One 2011; 6(2): e14739. lepsy services 1905–1965. In Healthy Minds in the Twentieth Century: In
and Beyond the Asylum (eds SJ Taylor, A Brumby): 53–72. Springer
21 Weaver ICG, Cervoni N, Champagne FA, D’Alessio AC, Sharma S, Seckl International Publishing, 2020.
JR, et al. Epigenetic programming by maternal behavior. Nat Neurosci
2004; 7: 847–54.
22 Thibodeau EL, Masyn KE, Rogosch FA, Cicchetti D. Child maltreatment,
adaptive functioning, and polygenic risk: a structural equation mixture
model. Dev Psychopathol 2019; 31: 443–56.

SPECIAL ARTICLE

The emotional and mental health needs of young

carers: what psychiatry can do
Roswitha Dharampal,1 Cornelius Ani2

BJPsych Bulletin (2020) 44, 112–120, doi:10.1192/bjb.2019.78

1
Tavistock and Portman NHS Foundation Aims and method To review the literature on the emotional and mental health
Trust, UK; 2Surrey and Borders
needs of young carers of parents with mental illness and the extent to which such
Partnership NHS Foundation Trust and
Imperial College London, UK needs are recognised and supported by professionals. Three databases were
Correspondence to R. Dharampal
systematically searched from 2008 to 2018, and five studies met the inclusion
([email protected]) criteria.
First received 30 Aug 2019, accepted Results The key findings were that young caregivers had a significantly higher
22 Sep 2019
dose-response mortality risk than their peers; were at increased risk of mental health
© The Authors 2019. This is an Open
difficulties, especially where the ill family member was a parent and had mental
Access article, distributed under the
terms of the Creative Commons illness or misused substances; were overlooked by professionals owing to a lack of
Attribution licence (http:// awareness; but could derive benefits from their caring role when appropriately
creativecommons.org/licenses/by/4.0/), supported.
which permits unrestricted re-use,
distribution, and reproduction in any Clinical implications Young carers are at increased risk regarding emotional and
medium, provided the original work is mental health needs; this risk could be mitigated by professionals recognising the
properly cited.
young carer’s role and including them in their parent’s treatment plan.
Declaration of interest None.
Keywords Young carers; mental health; psychiatry; systematic review.

Background
cared for their parents, siblings or family members, an
Societal awareness of young carers and the potential effects of increase of 20% on the number recorded in the 2001
caring on their health and development has increased in the Census.4,5 However, this was thought to be an underestimate.2
past 20 years.1 A ‘young carer’ is ‘a child or young person The prevalence of informal caring in the underage population
under 18 who provides regular or ongoing care and emotional was estimated as a minimum of 2–4% in Western countries.6
support to a family member who is physically or mentally ill, Dearden and Becker reported that most young carers
disabled or misuses substances’.2,3 The 2011 Census in cared for parents, particularly mothers, although some pro-
England and Wales showed that 166 363 children in England vided support for grandparents, siblings or other relatives.

112
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

Tasks undertaken by young carers included housework, gen- parental mental ill health was a significant factor for chil-
eral healthcare – for example, assisting with mobility or giv- dren entering the care system.30
ing medication – intimate personal care such as bathing or Aggregated data suggested that a child had a 30–50%
toileting, and emotional support.7 Emotional support by chance of developing a serious mental illness if they had
young carers was more likely to be offered to parents with two parents with mental illness.31 A child of a parent with
a mental health problem.7–10 Caring responsibilities ranged an affective illness had a 40% chance of developing an affect-
from a few hours a week to over 100 in extreme cases.11 ive disorder by age 20, compared with a 20–25% risk in the
Half of all conditions supported by young carers general population.32–35 However, the increased risk noted
involved physical health, but almost a third (29%) were for in these studies may have a multifactorial aetiology.
mental health problems, while 17% related to learning diffi- It has also been argued that younger carers can some-
culties and 3% were for sensory impairments.7,12 times overcome the effects of extreme adversity36 with infor-
Extrapolating from these figures suggested that 55 000– mation, recognition of their role, and inclusion in their
60 000 children in the UK cared for a parent with mental ill- parent’s treatment plan. Studies suggest that some young
ness.13 According to 2018 estimates for England, 3.7 million carers may even derive some benefit from their caring role.
children aged 0–17 (31.7%) were in a household where a ran-
domly selected adult had at least moderate mental health
symptoms, including 1.6 million (13.5%) where the adult Aim
had severe mental health symptoms.14
For psychiatrists, the young carers most likely encoun- The main aim of this literature review was to explore the
tered in work are those of their adult patients with mental emotional and mental health needs of young carers and
illness. Estimates in Australia and the USA of the proportion their circumstances, particular those related to their par-
of people accessing mental health services who were parents ents’ mental health. The review also explored the extent to
ranged from 20 to 60%.15–18 In the UK, the majority had which the needs of young carers were recognised and sup-
common mental disorders such as depression or anxiety, ported by the psychiatrists and other professionals working
but some (0.5%) had a psychotic condition.19 According to with their parents.
recent UK estimates, parents comprise at least 25% of
adult mental health patients with significant interpersonal/
personality difficulties, including 63% of women with psych- Method
osis and 25% of adults in acute psychiatric hospital The PRISMA guideline37 was followed to search three data-
settings.20 bases (EMBASE, Medline and PsychInfo), which are access-
The 2011 Census in England and Wales showed that one ible from the Royal College of Psychiatrists library. The
in eight young carers was under the age of ten, and some search covered 2008–2018 using the terms ‘emotional health
were as young as five.5 According to Canadian research or emotional stability or psychological health or social
among youth aged 15–24 years, females accounted for the psychology or mental health’ and ‘young carers’ or ‘young
majority of carers, and there was an increasing feminisation and carers’ or young caregivers or ‘young and caregivers’.
of care as youth aged, the differences being most acute at the Boolean operations and truncations were employed to
highest care levels.21 It was suggested that this pattern was allow for alternative endings in the keyword searches. The
similar to that in the UK and Australia.7,10,21 A further UK search was limited to the past 10 years in order to focus
survey suggested that young carers were 1.5 times more on more recent developments in the field, which are more
likely than their peers to be from Black, Asian or minority likely to be relevant to current practice. Additional literature
ethnic communities, and twice as likely to not speak was accessed through contact with the authors of some of
English as their first language. They were 1.5 times more the papers, a charity that supports young carers, and
likely than their peers to have a special educational need references from retrieved papers.
or a disability.11 Studies were included if they were published in English
How the young carer and parent were viewed often and involved a primary study published in the past 10 years
depended on the disability or diagnosis, such that having that identified the emotional and mental health needs of
parents with mental health problems was presumed to young carers and had a minimum of 14 participants. The lat-
pose more adverse challenges.1 Young carers were often con- ter criterion was based on the fact that very small sample sizes
sidered as a homogenous group; however, it has been argued would limit the generalisability of results to the wider young
that those caring for a mentally ill parent could experience carer population.38 Four hundred and eighty-eight abstracts
particular risks and needs. Studies from several countries were identified; initial screening identified 43 relevant studies,
have found that children of parents with a mental illness whose full texts were assessed. Finally, five studies were
were at a greater risk of poorer outcomes than their selected (Fig. 1).
peers,22,23 with higher rates of mental illness24 and poorer
development in behavioural,25,26 social,27 and academic28
domains.22 According to Pakenham and Cox, the presence
of any family member with an illness was associated with
Results
a greater risk of mental health difficulties for young people, The literature review focused on five recent papers pub-
relative to their peers from ‘healthy’ families. This risk was lished between 2013 and 2018 which investigated the emo-
further elevated if the ill family member was a parent and tional and mental health needs of young carers, the
had mental illness or abused substances.29 In the UK, circumstances which gave rise to them, current psychiatric

113
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

Identification
Papers identified through database Additional papers identified
searching through other sources
(n = 497) (n = 13)

Papers after duplicates removed

Screening (n = 488)

Abstracts screened Papers excluded

(n = 488) (n = 445)

Full-text articles assessed

Full-text articles excluded
for eligibility
Eligibility

(n = 38)
(n = 43)

Studies included in
literature review
(n = 5)
Included

Fig. 1 Study selection

practice and possible improvements. One study39 was ethnic background. An eight-item family responsibilities
census-based, retrospective and longitudinal. The others, subscale of the Young Carer of Parents Inventory40 was
reflective of the majority of studies in the search, were quali- used to assess youth caregiving. A range of positive and
tative and recorded the experiences of young carers. The negative youth adjustment outcomes were assessed by
papers showed the increased and particular needs and behavioural-emotional-social difficulties, somatisation and
risks of young carers of a parent with mental illness, with health. Positive adjustment outcomes were assessed by fam-
one study identifying what it referred to as a ‘young carer ily satisfaction, life satisfaction, positive affect and pro-social
penalty’.38 The census-based study further found a higher behaviour.
mortality risk among young carers.39 The shortcomings of The results showed that the presence of any family
mental health services in their consideration of young carers member with an illness was associated with greater risk of
were also raised. The studies are summarised in Table 1. mental health difficulties for youths compared with their
A study by Pakenham and Cox examined differences in peers from ‘healthy’ families. Using Cohen’s effect size con-
adjustment between children of a parent with an illness and ventions, the effect sizes for the significant outcomes for
peers from ‘healthy’ families, controlling for whether a parent parental illness group ranged from small (0.22) to very
or non-parent family member was ill, the illness type, demo- large (1.0), but they were uniformly small for the ‘other fam-
graphics and caregiving.29 The study was questionnaire-based ily members’ illness group (range 0.08–0.18). This risk of
and had a total sample of 2474 youths, comprising those from poorer adjustment was elevated if the ill family member
‘healthy’ families = 1768 and those from families with parental was a parent and had mental illness or misused substances.
illness = 336, other family member illness = 254, and both par- The latter risk held even when caregiving and demographic
ental and other family illness = 116. The youths, aged 9–20 factors were considered. Incidentally, caregiving itself was
years, were recruited in Queensland, Australia, mostly from associated with poorer adjustment in six of the seven out-
schools. However, recruitment also took place through comes considered, even after controlling for illness type
church groups (n = 35), scouts (n = 23), university vacation and a range of sociodemographic factors.
care (n = 13), and a young carer association (n = 42) in order Parental illness and illness in other family members
to achieve more diversity in the sample. were both significantly associated with more negative out-
The youths completed questionnaires to obtain infor- comes compared with ‘healthy’ families for all but two out-
mation on their age, gender, home postcode, employment, comes. The effect of ‘parental illness’ was significantly larger
dual- versus single-parent family, number of siblings and than for ‘other family member’ illness for all but one

114
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

Table 1 Summary of studies reviewed

Citation Study design, country and sample Results Conclusion
Leu et al54 Semi-structured interviews Tasks depended on nature of illness/ Highlighted importance of
(n = 30) Switzerland impairment and availability of other communication with family,
16 young carers aged 10–17 years family carers. Intensity varied from professionals and peers
14 young carers aged 18–25 years part- to full-time responsibility
Millenaar et al53 Semi-structured interviews Divided into three themes that In addition to practical information,
(n = 14) The Netherlands demonstrated effects of dementia on more accessible and specific
14 children aged 15–27 years living with daily life, different ways of coping, and information about diagnosis and
a parent with young-onset dementia children’s need for care and support course of YOD needed to provide
(YOD) better understanding for children.
Underlined need for personal,
family-centred approach.
Packenham and Questionnaire Survey Presence of any family member with Serious health problems within
Cox29 Australia illness associated with greater risk of household adversely affect youth
(n = 2474) 2474 youth aged 9–20 years (‘healthy mental health difficulties for youth. Risk adjustment
family’ n = 1768, parental illness n = 336, elevated if ill family member is parent
other family member illness n = 254, and has mental illness or substance
both parental and other family member misuse
illness n = 116)
Stamatopoulos38 Two focus groups and one in-depth Evidence for unique ‘young carer Ongoing youth caregiving constitutes
(n = 15) interview Canada penalty’ a form of hidden labour that carries
15 young carers aged 15–19 years with it a range of benefits and
penalties
Tseliou et al39 Census-based mortality linkage study Young caregivers more likely than Young caregivers at significantly
(n = 19 621) Northern Ireland Caregivers aged 5–24 non-caregiving peers to report chronic increased risk of poor health
years poor mental health. They also differed outcomes
from older caregivers and were at
significantly higher mortality risk than
peers. Dose-response relationship
between hours devoted to caregiving
and mortality risk evident

outcome, although the effect sizes were small. However, as moderated by growing recognition that older caregivers
these data were cross-sectional, the associations may not had a reduced mortality risk compared with non-caregiving
be causal, as it is also possible that the additional risk attrib- peers.45–52 At older ages, less intense caregiving was asso-
uted to caregiving may be confounded by other unmeasured ciated with a reduced risk of chronic poor mental health.
factors such as genetic influences. However, by 25–44 years old, this was reversed such that a
A recent study39 investigated the association between positive dose-response association was observed between
caregiving and health/mortality risk in young caregivers caregiving status and mental ill-health. This adverse effect
when compared with non-caregiving peers and older care- was most evident among 5–17-year-olds. In this younger
givers. They used a census-based record to link all residents cohort, those providing more intensive caregiving were
enumerated in the 2011 Northern Ireland Census with sub- more than twice as likely as non-caregiving peers to have
sequently registered deaths data, until the end of 2015. poor mental health (adjusted OR = 2.46, 95% CI: 1.70, 3.56).
Among those aged 5 to 24 years in the 2011 Census, approxi- Light caregiving may be associated with a positive effect
mately 4.5% were reported to be caregivers. The presence on physical health, such as fewer chronic mobility problems
of a chronic physical and/or mental health condition was compared with non-caregivers.39 However, this apparent
measured through the Census, and all-cause mortality was benefit of caregiving was not observed among younger carers
assessed by official mortality records. providing higher levels of care. The authors hypothesised
This study found that young caregivers had a signifi- that the protective effect of light caregiving, especially for
cantly higher mortality risk than their peers (adjusted haz- older carers, could be due either to the physical require-
ard ratio = 1.54, 95% CI: 1.10, 2.14). A dose-response ments of the caregiving role or an instance of ‘selection
relationship between the hours devoted to caregiving duties into the role’ by healthier individuals.39 To further illustrate
and mortality risk was evident. Young caregivers were also the differential effect of care givers’ age, the authors strati-
more likely to report chronic mental health problems than fied the data by age group (young adults versus children
their non-caregiving peers (adjusted odds ratio (OR) = 1.44, and adolescents) and found that although less-intensive
95% CI: 1.31, 1.58). caregiving in the older cohort was associated with 35–40%
Further, young carers differed from older caregivers, reduced odds of reporting chronic mobility problems,
with the odds of reporting poor mental health inversely those aged 5–17 were more likely to report mobility pro-
related to age. Tseliou et al maintained that although the blems (OR = 1.61, 95% CI: 1.16, 2.23).39
majority of studies found that caregiving may be associated Although the census-based study by Tseliou et al had
with poor mental and emotional health,41–44 this had been unsurpassed population coverage and encompassed many

115
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

hard-to-reach groups, it was nonetheless limited by the fact awareness about young carers and their roles and responsi-
that it may have missed a disproportionate number of young bilities.55 In particular, getting into contact with healthcare
adults and caregivers in deprived inner-city areas. Also, the professionals in hospitals seemed to be challenging when
proxy nature of census returns makes it likely that the par- young people were the main carer. Information was often
ent or guardian completed the ‘self-assessed’ health ques- withheld by healthcare personnel owing to a perceived
tion, which might have led to confounding, although not need for confidentiality. Some young adult carers had to
for mortality risk. resort to alternative ways, for example, the internet, to
The literature search identified a study which explored access necessary information when neither professionals
the experiences and needs of children living with a parent nor the care-receiving family member provided it.
with young-onset dementia.53 The study recruited 215 In the final study selected for this literature review, a
patients and their families through memory clinics, regional qualitative focus group design was chosen to explore the
hospitals, mental health services and specialised day care in ‘lived realities’ of young people providing unpaid familial
The Netherlands. For ethical reasons, inclusion was caregiving in Canada.38 Two focus groups and one in-depth
restricted to children older than 14 years. There were a interview were held with 15 young people aged 15–19
total of 35 eligible participants living in 29 families, of years, who were current or past members of a formal
which 15 agreed to participate. The method involved semi- young carers programme. Participants also completed a
structured interviews with 14 of the young people, six short survey after the discussion, representing a form of
males and eight females, aged between 15 and 27, with an ‘concurrent triangulation’. Purposive sampling was used to
average age of 21 years. In three families, the mother had recruit young carers.
dementia. The mean age of the parent was 53.6 years. Five Over half the youth provided care primarily to a sibling,
of the parents had Alzheimer’s disease, four had frontotem- with the next largest group caring for a parent, and several
poral dementia, one had vascular dementia and one had caring for multiple family members. The main conditions
dementia not otherwise specified. Most of the parents had ranged from substance (alcohol) abuse to terminal cancer
mild to moderate dementia. The type of care the young peo- to autism, and a high likelihood of comorbidity existed.
ple provided included housekeeping tasks (cooking, cleaning, A diverse range of ethno-racial profiles were captured,
and grocery shopping), supervision and social contact. with just under half the participants self-identifying as
Semi-structured interviews were analysed using a quali- Caucasian and the remaining as Arab, Black, South Asian
tative inductive content analysis, which revealed three major and Chinese. However, gender imbalance was evident, with
themes. The first theme indicated the effects of dementia on only three male young carers in the sample. The author
daily life, including changing relationships within the family, maintained that this partly reflected the conflict boys experi-
children’s difficulties managing responsibilities while main- enced when discussing or recognising their care contribu-
taining a life of their own, and children’s concerns about tions. ‘This gendered reticence by young men due to the
their future. The second theme reflected the different ways presumed violation of expected gender roles makes it more
the children coped, including acceptance, avoidance, search- difficult for them to get recognition and receive dedicated
ing for relief and actively dealing with changes. The third support as carers’.38
theme revealed the need for care and support. Many chil- The young carers derived a range of positive benefits,
dren wanted to know more about dementia but received lit- including added maturity, empathy and the strengthening
tle information after the diagnosis from either their parents of familial bonds. However, they also incurred a range of dif-
or healthcare professionals. In addition, they wanted prac- ficulties that caused short- and long-term harm to their per-
tical guidance in dealing with their parent. sonal and professional development Together, these
However, the study by Millenaar et al was limited by the difficulties presented what the author referred to as a
less-than-optimal representativeness of the sample due to ‘powerful young carer penalty’, a term used to highlight
the restricted availability of children in the target population the personal (emotional, familial and social) and profes-
and high refusal rates. The authors acknowledged that these sional (education and employment-based) disadvantages
sampling difficulties may have led to an underestimation of incurred by the young person’s substantial and ongoing
needs, because those who were not included may have caregiving.38
found it too demanding to participate in the study or too dif-
ficult to talk about their needs.
A qualitative study with young carers and young adult
carers in Switzerland further explored the role of communi-
Discussion
cation with professionals about the caring situation.54 The main aim of this literature review was to investigate the
Interviews were conducted with 16 carers aged 10–17 years emotional and mental health needs of young carers and their
and 14 aged 18–25 years. The interviews were recorded, circumstances, particular those relating to their parents’
transcribed and analysed following a grounded theory mental health. It also explored the extent to which the
approach. needs of young carers are recognised and supported by psy-
The study reported that the participants found talking chiatrists and other professionals working with their par-
to professionals was often seen as difficult. The young people ents, with shortcomings raised. The review concentrated
described situations in which they were simply overlooked on five papers that showed the increased and particular
by experts from healthcare or social services. It was recog- needs and risks of young carers of a parent with mental ill-
nised this generally did not happen because of malicious ness. One even found a higher mortality risk among young
intent by professionals, but rather owing to a lack of carers. The findings are further explored here.

116
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

According to Pakenham and Cox the type of illness pre- severity of the ‘young carer penalty’ was associated with two
sent in the home was associated with differential adjustment key factors: family size and type of condition requiring care.
outcomes, with mental illness and substance problems asso- Specifically, participants from single-parent and single-child
ciated with more negative adjustments across a range of out- families generally incurred a greater ‘penalty’, as did those
comes.29 They suggested a potential explanation for these providing care in the context of more stigmatised illnesses
findings: that in general, compared with physical illness, such as mental illness and substance abuse, and/or more
mental illness and substance misuse were less understood debilitating physical illness or disability.38
in the community and more likely to be associated with In their study on the variation of caregiver health and
greater social disadvantage, unpredictability of symptoms, mortality risk by age, Tseliou et al proposed a number of rea-
family and social disruption, stigma, discrimination and sons that caregiving may be deleterious to the health and
parent-child attachment difficulties. well-being of young carers.39 Providing care could have
These results are similar to findings from previous stud- interfered with schooling and the formation of healthy social
ies. Cooklin and Hindley suggested that parental mental ill- networks, thereby creating issues with other aspects of social
ness could be responsible for serious interruptions in a and emotional development and leading to a problematic
child’s cognitive and emotional development.56 They cited transition to adulthood. The authors suggested that many
a list of adversities faced by children affected by parental of the positives associated with caregiving at older ages
mental illness, which could affect their emotional life, may not hold true for younger ages. At older ages, where
attachment and development. These included the ill parent’s activities such as paid employment no longer applied, care-
disordered thinking and behaviour, the loss of emotional giving may provide a purposeful role that tightens interper-
closeness and the witnessing of distressing side-effects of sonal bonds appropriate to expectations of both age and
treatments.56 According to Mechling, many children wit- existing relationships, and may be seen as a natural progres-
nessed or had to assist their parent in a mental health crisis, sion, with positive caregiving attributes being associated
such as a suicide attempt, psychotic episode or aggressive with lower mortality risk. At younger ages, the expectations
state,57 leading other authors to highlight that this was a of role relationships and function are different, and signifi-
responsibility beyond young people’s years.8,58,59 cant caregiving responsibilities are likely to be at variance
Millennaar and colleagues discussed the influence on with perceived social norms. In contrast to older ages,
the daily lives of children of parents with young-onset young caregivers may feel constrained in undertaking a
dementia. Children felt that the child-parent bond was role they had little choice in accepting and that they consid-
inverted as their parent became increasingly dependent.53 ered inappropriate for their age. The authors highlighted
There was more tension at home due to the stress of the car- that the feeling of duty to provide care has been linked to
ing process and changes in the parent with dementia. They high caregiver burden and worse outcomes among child
witnessed strain on a healthy parent, had difficulties adjust- caregivers.
ing to the behavioural, cognitive and personality changes in Leu et al raised the failure among professionals to iden-
the parent with dementia, and had to contribute more to the tify young carers and some potential causes of their health
household. Millennaar et al also suggested that parents of and emotional difficulties.54 Although many parents may
young carers were not always aware of their child’s needs. have had an earlier diagnosis of, for example, depression,
Similarly, according to Stamatopoulos, substantial care- bipolar disorder, schizophrenia or personality disorder, they
giving by young people affected their joint familial, social may later have gone unnoticed by services.57 A secure attach-
and emotional well-being. Numerous young carers revealed ment between child and parent could have been undermined
strained familial bonds, often linked to a real or perceived if the parent was inadequately treated or supported.61 When
inequality in the provision of care, in addition to limited treatment did occur, clinicians may not have asked whether
opportunities for socialisation outside the household. the adult client had children, and, if parental status was dis-
A heightened sense of missing out created strain on existing cussed, the focus of treatment was on the adult and the child’s
friendships and was tied to an inability to partake in social needs may have been overlooked.57 Millenaar et al found that
outings outside school.38 Unbalanced friendships, resulting professionals in contact with families often failed to identify
from parental-role spillover, further strained young carers’ children as providers of informal care because they did not
existing peer network. ask about their caring role.53 A Royal College of Psychiatry
Pakenham and Cox hypothesised that the elevated mental report recognised that professionals may have agreed that
health problems in children of a parent with illness relative to offering support to the children of their patients was import-
those from healthy families were due to their extra caregiving ant but often felt this was not their role, and their natural
demands.29 However, they found that the effects on youth sympathy and alliance with their patient may have led to
adjustment of a family member with serious illness were not ‘blindness’ about the needs of the child.33 Staff in mental
attributable in the main to factors such as differential access health teams or in-patient services may have seen themselves
to community services, being in a sole parent family, the age as solely the ‘patient’s person’.62 Some may have seen it as
or gender of the youth, or increased caregiving responsibilities, above or outside their expertise or responsibility, and there-
although all these factors were implicated in adjustment out- fore the province of someone else’s responsibility.62 Wolpert
comes. They acknowledged that the absence of significant et al maintained that the needs of young carers had been trad-
interactions in their results was not consistent with a previous itionally overlooked, falling between adult and child mental
study,60 where a complex set of potential moderators includ- health services. However, Child and Adolescent Mental
ing age of children, socioeconomic status and single parent- Health Services only see a small proportion of children
hood were identified. Stamatopoulos also found that the affected by parental mental illness.62

117
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

Cooklin suggested that for some young carers, the Thus, a ‘whole family approach’ model, developed in the
involvement of services can sometimes worsen aspects of UK has begun to be the dominant paradigm internationally.
their experiences. Even though a young carer had often been In an NHS England presentation, Cooklin recommended
managing the situation for months, no one asked their advice, that all psychiatric adult care plan assessments should
what they knew about their parent’s illness, or what made it establish: knowledge of all children face to face; who if any-
better or worse.13 Ali et al found that young carers received one has assessed the needs of the child or the effects of the
several kinds of information about mental illness and advice parent’s illness on them, and what if any referral needs to
about what to do as long as the person with the mental illness be made; and who has explained the patient’s illness to
was within the healthcare system, but as soon as they were the child.56
discharged, support for the young carer ended too.63 Despite In the UK, the Care Act 2014 and Children and Families
the statutory requirement in the UK that mental health ser- Act 2014 provided statutory recognition for young carers’
vices elicited the views of children and young people about entitlement to regular assessments of their ability and suit-
the care plans for their parents’ treatment, relatively few ability to provide care, and, importantly, of the effects of the
were talked with directly about the nature of the illness.62 role on them.66 Of note, the UK alone was classified as
McAndrew et al cited young carers’ experience of their relative ‘advanced’ in an international comparison of awareness
being discharged from hospital but no one explaining about and policy responses to young carers.67 The UK was
changes in their medication, the administration of which advanced in terms of awareness, research, law, social policy,
had previously been the young carer’s responsibility.30 government guidance and service delivery. No country was
Similar to other young carers, some children of parents with identified as having developed extensive awareness or sus-
young-onset dementia were not included in conversations tained or sustainable policies. The analysis noted that the
with healthcare professionals after diagnosis.53 reality in most countries is that young carers still fall
Not all children of parents with a mental illness through gaps in policy and legal safety nets.
reported poor outcomes.22,38 Dearden and Aldridge main-
tained that there were positive aspects of caring for children
and parents, as long as support services were in place which
adequately addressed the needs of all family members.
Limitations
These positive aspects included enhanced maturity, respon- The main limitation of studies in this review was the absence
sibility and independence, life skills, increased understand- of intervention studies relating to young carers. Most of the
ing about disability issues and stronger family ties.64 studies were qualitative and recorded the experiences of
According to Fraser and Pakenham, this led to the develop- young carers and professionals in contact with them.
ment of a resilience model whereby the potential harmful Although the qualitative studies were limited by small sample
effects of risk factors were mitigated by the influence of pro- sizes, resulting in poorer generalisability of their findings, they
tective factors. Interventions should therefore focus on tar- had the strength of seeking out more detailed and in-depth
geted modification of risk factors such as isolation, while accounts.21 The review was limited by searching only three
promoting protective factors including independence and main databases. Also, the search was limited to recent papers
psychosocial skills.22 published in the past 10 years. Finally, only the first author
Bilsborough reported ten demands of mental health pro- applied the selection criteria.
fessionals by young carers, of which the top three were (a)
introduce yourself, (b) tell us who you are and what your
job is, and (c) give us as much information as you can.65
Cooklin identified what children said they needed: a two-way Conclusion
explanation of the parent’s illness’ access to a neutral adult This literature review found that children and adolescents
with whom the child could discuss the illness and contact who cared for a parent with illness may be at higher risk
in times of crisis, and who could act as the child’s advocate; of a range of emotional and mental health needs. Those
an opportunity for the child to address their fears that they who specifically care for a parent with mental illness could
would ‘catch’ or that they ‘caused’ the illness or that the be at an increased risk, possibly owing to the potential for
parent may die from it and/or they might not see them a more disordered relationship with the parent as a result
again; interventions to diminish the child’s social isolation, of their mental illness. However, it is argued that such adver-
to learn they are not the only one with the problem, and to sities could be mitigated with the help of information, recog-
allow them to meet other young people with similar experi- nition of the young carer’s role, and their inclusion in the
ences; and rebalancing the child’s inverted role as carer, parent’s treatment plan. Internationally, the UK appears to
including opportunities to do childish or youthful activities afford the most recognition to young carers. However,
with other young people and sharing the load of responsi- many young carers in the country are still falling through
bility with one or more adults.62 However, Cooklin warned the net because mental health professionals who treat
of the dangers of offering counselling unless the child their parents fail to recognise the significance of young
explicitly accepted the idea of therapeutic help, as this carers. Changes in practice to address this are crucial.
might increase their unwelcome sense of identification
with the ill parent and define them as on a similar
pathway.62
It was noted that family work or therapy has become Funding
more available within adult mental health services.62 None.

118
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

Acknowledgements 14 The Children’s Commissioner for England. Estimating the Prevalence of the
‘Toxic Trio’. Evidence from the Adult Psychiatric Morbidity Survey. Vulnerablity
We thank Dr Ananta Dave, Medical Director, Consultant Child & Adolescent Technical Report 2. Children’s Commissioner for England, 2018.
Psychiatrist, Lincolnshire Partnership NHS Foundation Trust, for continual
15 Hearle J, Plant K, Jenner L, Barkla J, McGrath J. A survey of contact with
support as Fellowship Supervisor; Dr Peter Byrne, MD MRCPsych, offspring and assistance with childcare among patients with psychotic
Consultant Liaison Psychiatrist, Royal London Hospital and Associate disorders. Psychiatr Serv 1999; 50: 1354–6.
Registrar RCPsych for Public Mental Health; and Dr Alan Cooklin,
FRCPsych, Consultant in Family Psychiatry and founder of Our Time, a char- 16 Ahern K. At-risk children: a demographic analysis of the children of cli-
ents attending mental health community clinics. Int J Ment Health Nurs
ity for the children of parents with mental illness, for advice; Our Time for use
2003; 12: 223–38.
of its resources; and Shaun Kennedy, Librarian, Royal College of Psychiatrists,
for undertaking the literature search. 17 Nicholson J, Biebel K, Williams VF, Katz-Levy J. The prevalence of
parenthood in adults with mental health illness: implications for
state and federal policymakers, programs, and providers. In Mental
Health, United States, 2002 (eds Manderscheid R, Henderson M): 120–
37. United States Department of Health and Human Services, 2004.
About the authors 18 Maybery DJ, Reupert AE, Patrick K, Goodyear M, Crase L. Prevalence of
Roswitha Dharampal was the Dinwoodie Research Fellow for Children First, parental mental illness in Australian families. Psychiatr Bull 2009; 33: 22–6.
Royal College of Psychiatrists, and is ST6 in Child and Adolescent Psychiatry, 19 Parker G, Beresford B, Clarke S, Gridley K, Pitman R, Spiers G, et al.
Tavistock and Portman NHS Foundation Trust, London, UK; Cornelius Ani is Technical Report for SCIE Research Review on the Prevalence and
Honorary Clinical Senior Lecturer, Division of Psychiatry, Imperial College Incidence of Parental Mental Health Problems and the Detection,
London, and Consultant in Child and Adolescent Psychiatry, Surrey and Screening and Reporting of Parental Mental Health Problems. Social
Borders Partnership NHS Foundation Trust. Policy Research Unit: University of York, 2008.
20 Day C. Parental mental health & impact on children & young people.
Presentation at Hearing Young Voices Conference, 2019.
21 Stamatopoulos V. One Million and counting: the hidden army of young
Author contributions carers in Canada. J Youth Stud 2015; 18(6): 809–22.

R.D. collected, analysed and interpreted the data, and drafted the manu- 22 Fraser E, Pakenham K. Evaluation of a resilience-based intervention for
script. C.A. supervised the work and contributed to the interpretation of children of parents with mental illness. Aust NZ J Psychiatry 2008; 42:
the data, drafting and critical revision of the manuscript. 1041–50.
23 Australian Infant, Child, Adolescent and Family Mental Health
Association. Children of Parents Affected by a Mental Illness, Scoping
Project Report. Mental Health and Special Programs Branch,
Department of Health and Aged Care, 2001.
References
24 Farrell G, Handley C, Hanke A, Hazelton M, Josephs A. The Tasmanian
1 Sprung S, Laing M. Young carer awareness and referral. Br J Community Children’s Project Report: The Needs of Children and Adolescents with a
Nurs 2017; 22(8): 398–406. Parent/Carer with a Mental Illness. University of Tasmania, 1999.
2 The Children’s Society. Hidden from View: The Experiences of Young 25 Mowbray C, Oyserman D, Bybee D, MacFarlane P, Rueda-Riedle A. Life
Carers in England. The Children’s Society, 2013. circumstances of mothers with a serious mental illness. Psychiatr
3 The Association of Directors of Adult Social Services (ADDAS), The Rehabil J 2001; 25(2): 114–23.
Children’s Society, The Association of Directors of Childrens’ 26 Rutter M, Quinton D. Parental psychiatric disorder: effects on children.
Services (ADCS). Working Together to Support Young Carers and their Psychol Med 1984; 14: 853–80.
Families: A Template for Local Memorandum of Understanding [MoU]
between Statutory Directors for Children’s Services and Adult Social 27 Thomas A, Forehand R, Neighbors B. Change in maternal depressive
Services. ADDAS, The Children’s Society, ADCS, 2012. mood: unique contributions to adolescent functioning over time.
Adolescence 1995; 30(117): 43–52.
4 Office for National Statistics. 2001 Census: General Report for England
and Wales. ONS, 2005. 28 Davies P, Windle M. Gender-specific pathways between maternal
depressive symptoms, family discord, and adolescent adjustment.
5 Office for National Statistics. 2011 Census: Key Statistics for England and Dev Psychol 1997; 33: 657–68.
Wales. ONS, 2012.
29 Pakenham K, Cox S. The effects of parental illness and other ill family
6 Becker S. Global perspectives on children’s unpaid caregiving in the members on the adjustment of children. Ann Behav Med 2014; 48:
family: research and policy on ‘young carers’ in the UK, Australia, the 424–37.
USA and Sub-Saharan Africa. Global Soc Policy 2007; 7: 23–50.6.
30 McAndrew S, Warne T, Fallon D, Roran P. Young, gifted, and caring: a
7 Dearden C, Becker S. Young Carers in the UK: The Report. Carers UK and project narrative of young carers, their mental health, and getting them
The Children’s Society, 2004. involved in education, research and practice. Int J Ment Health Nurs
8 Aldridge J, Becker S. Children caring for parents with mental illness. In 2012; 21: 12–9.
Perspectives of Young Carers, Parents and Professionals. The Policy Press, 31 Rubovits P. Project CHILD. An intervention programme for psychotic
2003. mothers and their young children. In Parental Psychiatric Disorder.
9 Becker S, Aldridge J, Dearden C. Young Carers and their Families. Distressed Parents and their Families (eds. Gopfert M, Webster J,
Blackwell Science, 1998. Seeman M): 161–9. Cambridge University Press, 1996.

10 Dearden C, Becker S. Young Carers in the United Kingdom: A Profile. 32 Beardslee WR, Bemporad J, Keller MB, Klerman GL. Children of parents
Carers National Association, 1998. with major affective disorder. A review. Am J Psychiatry 1983; 140:
825–32.
11 Department for Children, Schools and Families. The Longitudinal Survey
of Young People in England. Department for Education, 2010. 33 Royal College of Psychiatrists. Parents as Patients: Supporting the Needs
of Patients who are Parents and Their Children. College Report CR164.
12 Dearden C, Becker S. The experiences of young carers in the UK: the RCPsych, 2011.
mental health issues. Ment Health Care 1999; 2: 273–6.
34 Weissman M, Wickramaratne P, Nomura Y, Warner V, Pilowsky D,
13 Cooklin A. ‘Living upside down’: being a young carer of a parent with Verdeli H. Offspring of depressed parents: 20 years later. Am J
mental illness. Adv Psychiatr Treat 2010; 16: 141–6. Psychiatry 2006; 163(6): 1001–8.

119
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press
 SPECIAL ARTICLE
Dharampal & Ani Emotional and mental health needs of young carers

35 Weissman M, Obianuju Berry O, Warner V, Gameroff M, Skipper J, 52 O’Reilly D, Rosato M, Macgure A. Caregiving reduces mortality risk for
Talati A, et al. A 30-year study of 3 generations at high risk and low most caregivers: a census-based record linkage study. Int J Epidemiol
risk for depression. JAMA Psychiatry 2016; 73(9): 970–7. 2015; 44(6): 1959–69.
36 Wolpert M, Hoffman J, Martin A, Fagin L, Cooklin A. An exploration of 53 Millenaar J, van Vliet D, Bakker C, Vernooij-Dassen M, Koopmans R,
the experience of attending the Kidstime programme for children with Verhey F, et al. The experiences and needs of children living with a par-
parents with enduring mental health issues: parents’ and young peo- ent with young onset dementia: results from the NeedYD study. Int
ple’s views. Clin Child Psychol Psychiatry 2014; 20(3): 406–8. Psychogeriatr 2014; 26(12): 2001–10.
37 Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items 54 Leu A, Frech M, Jung C. Young carers and young adult carers in
for systematic reviews and meta-analyses: the PRISMA statement. Switzerland: caring roles, ways into care and the meaning of communi-
Ann Intern Med 2009; 151: 264–9. cation. Health Soc Care Community 2017; 26: 925–34.
38 Stamatopoulos V. The young carer penalty: exploring the costs of care- 55 Leu A, Frech M, Jung C. ‘You don’t look for it’ – A study of Swiss
giving among a sample of Canadian youth. Online J Child Youth Serv Professionals’ awareness of young carers and their support needs.
2018; doi:10.1080/0145935X.2018.1491303. Health Soc Care Community 2018; doi:10.1111/hsc.12574.
39 Tseliou F, Rosato M, Maguire A, Wright D, O’Reilly D. Variation of 56 Cooklin A, Hindley P. Young Carers and COPMI. Improving the response to
caregiver health and mortality risks by age: a census-based record link- Children of Parents with Mental Illness by Health and Social Care Services.
age study. Am J Epidemiol 2018; 187(7): 1401–10. NHS England Round Table Presentation to the Council of the Royal
College of Psychiatrists, 2015.
40 Pakenham K, Bursnall S, Chiu J, Cannon T, Okochi M. The psychosocial
impact of caregiving on young people who have a parent with an illness 57 Mechling B. The experiences of youth serving as caregivers for men-
or disability. Rehabil Psychol 2006; 51: 113–26. tally ill parents a background review of the literature. J Psychosoc Nurs
2011; 49(3): 28–33.
41 Hirst M. Care distress: a prospective, population-based study. Soc Sci
Med 2005; 61(3): 697–708. 58 Gray B, Robinson C, Seddon D. Invisible children: young carers of par-
ents with mental health problems – the perspectives of professionals.
42 Cuijpers P. Depressive disorders in caregivers of dementia patients: a Child Adolesc Ment Health 2008; 13(4): 169–72.
systematic review. Aging Ment Health 2005; 9(4): 325–30.
59 Aldridge J. The experiences of children living with and caring for par-
43 Christakis N, Allison P. Inter-spousal mortality effects: care-giver bur- ents with mental illness. Child Abuse Rev 2006; 15: 79–88.
den across the spectrum of disabling disease. In Health at Older Ages:
the Causes and Consequences of Declining Disability Among the Elderly 60 Sieh DS, Meijer AM, Oort FJ, Visser-Meily JMA, Van der Leij DAV.
(eds. Cutler D, Wise D): 455–77. University of Chicago Press, 2009. Problem behaviour in children of chronically ill parents: a meta analysis.
Clin Child Family Psychol Rev 2010; 13: 384–97.
44 Joling KJ, Van Hout HP, Schellevis FG, van der Horst HE, Scheltens P,
Knol DL, et al. Incidence of depression and anxiety in the spouses of 61 Grant G. Young people supporting parents with mental health pro-
patients with dementia: a naturalistic cohort study of recorded morbid- blems: experiences of assessment and support. Health Soc Care
ity with a 6-year follow-up. Am J Geriatr Psychiatry 2010; 18(2): 146–53. Community 2008; 16(3): 271–81.
45 Lopez J, Lopez-Arrieta J, Crespo M. Factors associated with the posi- 62 Cooklin A. Promoting children’s resilience to parental mental illness:
tive impact of caring for elderly and dependent relatives. Arch engaging the child’s thinking. Adv Psychiatr Treat 2013; 19: 229–40.
Gerontol Geriatr 2005; 18(2): 146–53.
63 Ali L, Ahlstrom B, Krevers B, Sjostrom N, Skarsater I. Support for young
46 Wolff JL, Dy SM, Frick KD, Kasper JD. End-of-life care: findings from a informal carers of persons with mental illness: a mixed-method study.
national survey of caregivers. Arch Intern Med 2007; 167(1): 40–6. Issues Ment Health Nurs 2013; 34: 611–8.
47 O’Reilly D, Connolly S, Rosato M, Patterson C. Is caring associated with 64 Dearden C, Aldridge J. Young carers: needs, rights and assessments.
an increased risk of mortality? A longitudinal study. Soc Sci Med 2008; In The Child’s World: The Comprehensive Guide to Assessing Children in
67(8): 1282–90. Need (2nd edn, ed. Horwath J): 214–28. Jessica Kingsley Publishers,
2010.
48 Brown SL, Smith DM, Schulz R, Kabeto MU, Ubel PA, Poulin M, et al.
Caregiving behaviour is associated with decreased mortality risk. 65 Bilsborough S. What we want from adult psychiatrists and their collea-
Psychol Sci 2009; 20(4): 488–94. gues: ‘Telling it like it is’. In Parental Psychiatric Disorder: Distressed
Parents and their Families (eds. Gopert M, Webster J, Seeman M):
49 Fredman L, Cauley JA, Hochberg M, Ensrud KE, Doros G. Mortality 3–7. Cambridge University Press, 2004.
associated with caregiving, general stress and caregiving-related stress
in elderly women: results of caregiver-study of osteoporotic fractures 66 McDougall E, O’Connor M, Howell J. ‘Something that happens and
(SOF). J Am Geriatr Soc 2010; 58(5): 937–43. stays at home’: an exploration of the lived experience of young carers
in Western Australia. Health Soc Care Community 2018; 26: 572–80.
50 Ramsay S, Grundy E, O’Reilly D. The relationship between informal
caregiving and mortality: an analysis using the ONS Longitudinal 67 Leu A, Becker S. A cross-national and comparative classification of
Study of England and Wales. J Epidemiol Community Health 2013; in-country awareness and policy responses to ‘young carers’. J Youth
67(8): 655–60. Stud 2017; 26(6): 750–62.
51 Roth DL, Haley WW, Hovater M, Perkins M, Wadley VG, Judd S. Family
caregiving and all-cause mortality: findings from a population-based
propensity-matched analysis. Am J Epidemiol 2013; 178(10): 1571–8.

120
https://doi.org/10.1192/bjb.2019.78 Published online by Cambridge University Press