Children of Parents with Mental Health Problems: Research, Policy and Practice
Issues (notes for International Working Group on Parental Mental Health and
Child Welfare)
Jo Aldridge
Mental health problems among both adult and children are widespread. Estimates
suggest that 1 in 4 of the general population will experience mental illness at some
point in their lives. This figure is derived from a number of epidemiological
population studies, which give an estimate of lifetime prevalence of mental illness.
(Kessler et al, 2005; Merikangas et al, 2010; Stefansson and Lindal, 2009); to date,
lifetime prevalence of mental illness has not been estimated in the UK alone, rather
studies focus on frequency in the past week, month or year (Weich et al, 2007;
Wittchen and Jacobi, 2005). More recent analysis of global statistics suggests lifetime
prevalence of mental illness among the general population could be much higher than
1 in 4. Statistics from UK charity Family Action (2011) suggest that up to 30% of
adults with mental illness have dependent children and the impact of parental mental
illness on children can be particularly detrimental - for example, impaired psychosocial development, under achievement at school, poor transition into adulthood
(Aldridge and Becker, 2003). Despite the global prevalence of mental illness and its
effects on children and families, and the multidisciplinary nature of the research and
work in this field, evidence of effective interventions for children (and families) is
sparse.
Current and envisaged changes in the NHS and social care provision in England are
having, and will continue to have, a marked impact on the most vulnerable of
families, with the ‘net’ of support for those with the most marked needs, including
serious mental health problems, having to stretch ever more widely. Despite recent
policy developments including the previous government’s Think Family Programme
and its associated ‘no closed door’ to access services ideal, the reality of this remains
significantly patchy and there is still no automatic consultation with adults accessing
mental health services, where they are parents, about the role and efficacy of services
in relation to their parenting needs as well as the needs of their children’s.
The need for accessible, up-to-date research and review knowledge will continue to
rise as the impact of current economic policies becomes clearer, as is evidenced in the
recent Social Care Institute for Excellence Research Review on access, acceptability
and outcomes of services/interventions to support parents with mental health
problems and their families (Parker et al, 2008). In this review of research evidence,
5705 publications were identified, showing the extent of research studies and
literature in the area of adult mental health and child welfare. The more recent
University of Manchester global scoping study has also identified 33,000 relevant
studies across the world. However, again, as the review shows, evidence of effective
interventions for children (and families) affected by parental mental illness is sparse.
Nevertheless, the consultation process that is currently underway with key
stakeholders involved in the University of Manchester study focuses on issues and
questions such as, the type of evidence that service commissioners would find helpful;
the nature of interventions for children and families that they would find most helpful
and what the best pathway would be into intervention (eg, child or adult services);
also: what are the barriers to implementation in terms of policy and practice? Who
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should deliver interventions that are most helpful and effective? The type and extent
of further research that needs to be done in this field
The current focus on early intervention in UK policy places parental mental health
problems in the spotlight and there are other major research initiatives currently
underway in the UK exploring this issue. These include a National Institute for Health
Research (NIHR) funded programme on perinatal mental health services and another
NIHR funded study on whole family approaches in mental health.
Children who live with and care for parents with mental health problems –
young carers
Until more recently in the UK (and elsewhere), medical research in particular
highlighted the negative impacts of parental mental illness on children and tended to
pathologise the issue as well as focus on risks to children; these included the risk of
children inheriting mental illness or developing learnt behaviours; as well as
attachment disorders following poor or ineffective parenting, particularly when
mothers experienced mental illness. Few studies adopted approaches that relied on the
first-hand accounts of children themselves. Early medical studies also recognised the
psychological risks to children of attachment disorders (as a result of the onset of
mental illness in one or both parents) that would result in precocious competence (for
example, care giving) and loss of childhood. More recent studies have also identified
care giving as a potential stress factor for children whose parents have mental illness;
whereas other research has shown that caring can help children develop resilience or
help them cope with the anxiety of living with a parent who is chronically ill.
Research that has focused specifically on children as care givers in the context of
parental mental illness recognises that there can be positive outcomes for children of
living with and caring for parents thus affected and that it is only when caring
becomes long term or disproportionate to children’s age or level of maturity that
adverse consequences occur relating to children’s emotional and mental well-being.
Caring only becomes long term or burdensome when professional support and
services are missing or inadequate. Furthermore, both caring and adverse
consequences of living with parent with mental illness are more likely to occur in
families where the impacts of social exclusion are profound or combine (eg the
impact of low income, poverty, poor housing etc, us again).
Aside from the impacts of social exclusion, other stress factors for children living
with a parent with mental illness identified in the research include bullying at school,
loss or grief due to martial breakdown, illness or the death of a parent. On the other
hand, many children either do not suffer adverse consequences of living with a parent
with mental illness or develop effective coping strategies. In family situations where
children are accorded a degree of control and have secure family relationships with
others - either aside from or including the affected parent – and where services are
based on holistic, whole family approaches, then children can develop resilience and
effective coping strategies.
Messages from research on children who care for parents with mental health
problems
2
In the UK, recognising children’s caring roles within families affected by parental
mental illness has resulted in these children being identified as children in need as
well as their inclusion in health and social care policy. In research, policy and
practice, young carers are defined as:
Children and young people under the age of 18 who provide care, assistance
or support to another family member. Young carers carry out, often on a
regular basis, significant or substantial caring tasks and assume a level of
responsibility, which would usually be associated with an adult. The person
receiving care is often a parent, but can be a sibling, grandparent or other
relative who is disabled, has some chronic illness, mental health problem or
other condition connected with a need for care, support or supervision (see
Becker, 2000, 378).
In the UK, research on young carers began in the early 1990s; small scale, qualitative
studies considered informal care provision from a children’s perspective. Until this
time the carers’ literature (as well as policy and practice) focused only on adult carers.
Two key areas for research – the prevalence of young caring in the UK and the
impacts of caring on children - were subsequently identified as critical in providing a
rigorous knowledge and evidence base to inform health and social care policy and
practice. The focus on young carers also coincided with new directions in research,
policy and practice with respect to the needs and rights of children and young people,
underpinned by the principles of the United Nations Convention on the Rights of the
Child (1989); the ‘new’ sociology of childhood; and new perspectives that focused on
the “narrative of the mind” of children (Hendrick, 1994).
Outcomes from the early research studies on young carers that focused on the
prevalence of young caring as well as the impacts of caring on children meant that
from the mid-1990s young carers were included in UK health and social care policy
and practice. Young carers were identified as ‘children in need’ and could receive
needs assessments under the Carers (Recognition and Services) Act 1995 and the
Children Act, 1989.
Prevalence of caring
Estimates based on secondary analysis of Census data in the 1990 suggested there
were around 175,000 young carers in the UK; more recent evidence from surveys of
UK secondary school aged children (11-16 years) suggest this figure to be in the
region of 700,000 young carers. Data from the Office for Population Censuses and
Surveys have shown that the prevalence of any ‘neurotic disorder’ and ‘functional
psychoses’ is highest among families with children. While it is difficult to be precise
about estimates of the numbers of children living in families affected by parental
mental illness, calculations can be made based on evidence collated from health and
social care services relating to the number of adult patients/service users of mental
health services who are also parents. Collating these statistics does, however, rely on
health and social care professionals identifying and making needs assessments of
adult patients/ service users that include assessments of parenting needs.
Evidence from studies from the Young Carers Research Group (YCRG) at
Loughborough University has highlighted the need for health and social care
professionals to recognise that parental mental illness can be a trigger for the onset of
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young caring – especially where holistic, whole family approaches are lacking, where
there is lone parenthood and where families experience adverse outcomes as a result
of social exclusion.
Impacts of caring
For children living with and caring for parents with illness/disability, research in the
UK (and elsewhere) shows that children experience a range of adverse consequences:


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Psycho-social: ‘precocious competence’ or early maturation; low self-esteem;
stigma by association; discrimination; parentification (although largely
contested in a number of later studies)
Education: absenteeism, lateness (due to caring commitments), under
achievement
Poor transitions into adulthood
Physical injuries (due to lifting for example) and emotional difficulties.
Positive outcomes for children who care have also been identified in the research.
These include:








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Enhanced parent-child relationships
Some children consider caring to be a positive experience but particularly
where:
Adequate and effective support services are in place (for child/ren and parents)
Holistic, whole family approaches are adopted by health and social care
professionals
Children feel able to disclose caring responsibilities and needs without fear of
family separation
Primary, secondary and tertiary health care consultations include children (in
care planning decisions, for example)
Children are given age appropriate information about illness/disability
School staff are understanding and supportive
NB: Positive caring experiences are undermined by the impacts of social
exclusion
Currently in the UK, young carers are included in a range of policy initiatives and
needs assessments can be made with reference to: the Children Act, 1989; the
National Carers Strategy (1999, 2008, 2010), the Department of Health’s Framework
for the Assessment of Children in Need and their Families (2000, 2009), the 1995
Carers (Recognition and Services) Act and the Carers and Disabled Children Act
2000. As a result of research on children who care for parents with mental health
problems in the UK, young carers are also now included in the Care Programme
Approach – the cornerstone of mental health services delivery in the UK (see:
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalass
et/dh_083651.pdf). Young carers (and their families) can also receive dedicated and
whole family support from young carers projects – there are around 140 such projects
across the UK that offer a range of services, including dedicated support aimed at
children who live with and care for parents with mental health problems (see:
www.ycrg.org.uk).
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http://professionals.carers.org/young-carers/
While young carers are identified in health and social care (and in research
governance frameworks) as vulnerable children (as children in need), more recent
emphasis has been placed on the need to identify the nature and extent of children’s
coping skills or strategies or their capacities for developing resilience.
Moore and Miller (1999, p 1034), define vulnerability as individuals who ‘lack the
ability to make personal life choices, to make personal decisions, to maintain
independence and to self-determine’. Resilience, on the other hand refers to ‘the
ability to withstand or recover quickly from difficulties’. Research on children and
young people more broadly has shown that their resilience ‘is enhanced by a secure
and reliable family base in which relationships promote self-esteem, self-efficacy and
a sense of control’ (Parrot, Jacobs and Roberts, 2008, SCIE Research Briefing 23).
Ways forward: Integration, participation, and consultation
Congruent with this emphasis on children’s resilience and the participation agenda
(based on the previous government’s implementation of Every Child Matters and the
Children Act 2004), as well as the principles set out in the UN Convention on the
Rights of the Child (1989), more recent research on children living with and caring
for parents with mental health problems has embraced and promoted inclusive,
participatory methods and approaches.
The principles and aims of participatory research with children who live with and care
for parents with mental health problems are:



To examine children’s experiences, needs and resilience when parents have
mental illness - from children’s perspectives
To engage participants as co-researchers in the research process
To facilitate children’s participation in research through the use of more
creative, visual methods – vulnerable participants engage well with
photographic participation methods
For example, the following is from Aldridge and Sharpe’s 2007 study, Pictures of
Young Caring1:
When my mum is ill I have to lock all the doors and we are not allowed to
answer the phone because she thinks somebody is going to hurt us and stuff. It
used to make me feel unhappy but not anymore. I’m supporting mum.
Sometimes I do get a bit annoyed. The next one is a prescription I go down
and get for my mother. I know what the medication does but I’m not sure
which one does which. It says it all on the medication. When I follow her to
the doctors I wait in the waiting room. I take her but then she has to go in by
herself because she goes in and talks and does not want to upset me. I check
her medication when she’s got home or when she’s feeling ill and times like
1
For a full discussion of the findings, see the downloadable report at: www.ycrg.org.uk; see also,
Aldridge, J. (2010) The participation of vulnerable children in photographic research, Visual Studies,
27 (1) 48-58. See also, Thomson, P. (Ed) (2008) Doing visual research with children and young
people, Routledge.
5
that I have to go and get them personally and make sure she takes them and
watch her. (Emma, 14, cares for mother who has schizophrenia)
That’s a picture of my mum and dad; you just want to hug them. I’m a carer
for my mum. On a really, really, really, bad day I will be doing absolutely
nearly everything. Dressing her, doing washing, vacuuming, cleaning, and
loads of things. These two weeks why I did not show anything in these photos
is because these two weeks were perfect, they’ve been very good. What dad
does is try and get money so he comes up with some weird and wonderful
things, and he’s trying to get on the market. He’s always trying to do
something new. He’s trying to just get some money in. (Fiona, 13, cares for
mother who has depression).
Evidence from this participatory research and other studies that use more creative
approaches with children and young people have been used to inform new practices in
primary health care consultations in the UK (see Redsell and Hastings (Eds) (2010)
Skills for Consulting with Children, Radcliffe Medical Press).
In the UK there has been a noted move away from a primary focus on the medical
model of mental illness to a social model, or Family Model (Falkov, 2013), that
recognises that people with mental health problems may also have parenting needs
and the importance of understanding the experiences and needs of children affected
by parental mental illness
The Parental Mental Health and Child Welfare Network (PMHCWN) in the UK has
been established since 2004 as the sole multi-disciplinary and multi-agency national
Network in the UK aimed at bridging the gap between adult mental health and
children’s services, recognising the needs of parents with mental health problems as
adults who were once children, and children as members of families that take many
forms and which cannot always be kept together. The Network currently has almost
1,000 members including a wide cross-section of frontline professionals working
across health and social care with adults, children and families, as well as researchers,
service managers, service users and carers. The range of agencies represented within
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the membership is very broad with members including, for example, child and adult
psychiatrists; managers and practitioners from children’s and adults’ social care;
health and social care researchers; community mental health nurses and other
practitioners, as well as a number of third sector organisations. Steering group
meetings and study days are two of the principal ways in which members currently
engage with one another.
The work of The Children’s Society Young Carers’ Initiative and the Carers Trust
(formerly the Princess Royal Trust for Carers) has also been vital in terms of
providing resources and assistance to children who live with and care for parents who
have mental illness and/or disability (and their families) and to the professionals who
support them:

The Children’s Society:
http://www.youngcarer.com/showPage.php?file=index.htm

The Carers Trust: http://www.carers.org/
In July/August 2012, the Carers Trust published its evaluation of the Innovation Fund
– £1million provided by the Department for Children, Schools and Families (DCSF)
in 2009 to,
Help young carers’ services develop and improve support to young carers and
their families. A key aim was to develop expertise and capacity within the
services to provide support that is more tailored to the needs of the family, so
reducing inappropriate levels of caring being undertaken by young carers.
7
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