Children who care

Children and young people who are caring for a parent with
mental health problems have a wide range of unmet needs, which are
limiting their prospects despite often close and long family
relationships.

Our research over the past two years (alongside Rethink, formerly
the National Schizophrenia Fellowship) which looked at the
experiences and needs of children caring for parents with severe
and enduring mental illness – including schizophrenia, personality
disorder and manic depression – found that these children have a
range of needs which are not being recognised or met.

Furthermore, the ongoing difficulties children face in these
contexts arise not just because their parents are mentally ill, but
because of children’s exclusion from professional consultation and
assessment procedures, discrimination from local and professional
communities and because of the assumptions made about the risks to
children of significant harm and abuse.

We talked to 40 young carers (using in-depth, semi-structured
interview techniques), 40 parents with severe and enduring mental
illness and 40 key workers involved with these families. We also
interviewed all three subject groups again after a 10-month period
to monitor and understand the effects of any changes that had
occurred in the families.

What we found was that:

• Children are not inevitably at risk of significant harm or
  development delay simply because parents have mental illness.
• Caring can sometimes help cement bonds between parents and
  children.
• Family life and mental illness itself can be made worse by
  ineffective services and discriminatory responses that families
  fear will lead to separations or child protection procedures.

Most of the professionals we talked to – including community
mental health nurses, psychiatrists, social workers and young
carers project workers – believed the outcomes for children of
living with and caring for parents with mental illness to be wholly
negative and damaging to childhood experiences and development.
(Some of the outcomes for parents and children suggested by
professionals ranged from, “children won’t know how to play” to “no
ability to parent” and “scruffiness” in children).

We know from medical research that children are at increased risk
of genetic inheritance of mental health problems when parents have
mental illness. We also know from child protection studies that
children can be at increased risk of significant harm or injury in
these contexts. However, until now, few studies have asked children
and parents themselves about their experiences of co-residency and
care.

From talking at length with these families we found that both
children and parents often describe and experience close and loving
relationships, which can sometimes be enhanced when children care
because it makes them feel both valued and included. However,
parent-child relationships, and even the enduring nature of mental
illness itself, can be adversely affected by discrimination and
social and professional exclusion. Families are also particularly
fearful of child protection procedures and family
separations.

Our research suggests that child protection decisions are often
made on the basis of a parent’s diagnosis and sometimes on an
assumption of risk to children when parents are mentally ill (as
well as on the possible adverse consequences of professional
indecision). The ongoing divisions between adult and children’s
services mean also that few professionals are adequately informed
about the symptomatic and behavioural outcomes of adult mental
illness and the true nature and extent of risk to children in these
situations.

But understanding fully these consequences for parents means
children must also be included in the picture. And yet few
professionals we talked to from adult mental health services had
included children, even informally, in their discussions with
parents (psychiatric research has found that few mental health
professionals are even aware that their “patients” are also
parents).

By the same token, there was little understanding among those
professionals working in children’s services about the true nature
of the consequences of mental illness for parents, their children
and families. For example, alarm bells would ring when children’s
workers found that parents self-harmed, and yet none of these
parents said they had ever hurt or injured their children. Research
also tells us that self-harming should not be grouped with risk to
others.

However, both the parents and children in our study described
discriminatory responses from professionals and, more particularly,
from local communities. This only served to increase family
problems and tensions. Some parents had lost paid work because of
discriminatory attitudes from colleagues and employers.

Children also experienced stigma by association with their mentally
ill parent and when children undertook caring responsibilities. One
young carer described the reactions of local children: “They say,
‘you look after your mum and dad, ha, ha, ha’, and they go, ‘at
least I haven’t got a mental dad’.”

Alongside discrimination, mental illness often brings with it other
social and economic factors such as unemployment, so the
circumstances surrounding mental illness are an important
consideration for professionals. Without this perspective and
without services and support that includes children (and families)
as well as “patients”, children will inevitably be called on to
provide informal care. While most parents were satisfied with the
type of services offered through mental health services’ care
programme approach (CPA) for themselves, none of the families
received adequate family support.

Services provided by community mental health teams were also often
inconsistent and discontinuous. As one parent with schizophrenia
commented: “Most of the time, unless it’s something really serious,
you see the house officer and at the moment, the house officers are
changed left, right and centre.”

It is in these contexts that children are called on to provide
immediate, flexible and consistent care, when parents need it most
and because services cannot be flexible or responsive enough. In
this respect the nature and duration of children’s caring
responsibilities is determined largely by the nature of the
parental illness itself, and by a lack of good quality, reliable
and timely support and services to the family as a whole.

The outcomes for children of caring in these ways can be both
positive and detrimental to their general well-being. On the whole,
we found children’s concentration and performance at school, and
their emotional stability, was affected most by worrying about
their parents’ health and by the fear of separation.

Others worried about parents’ symptoms and how these could bring
about rapid changes in parents’ behaviour. As one young carer said
about his mother: “She’ll go from all right to like a completely
different person, and it’s just being able to deal with it when it
comes around.”

What children need is recognition and support for what they do as
carers. And they need positive, dedicated interventions and
services (including formal needs assessments) as children with
distinct requirements and whose parents have severe mental illness.
Likewise, parents need dedicated mental health services that are
continuous and flexible, but they also need support in their
parenting roles. In short, interventions that aren’t just about
social services assessing whether parents are fit to care.

– The full research report, Children who Care for Parents with
Mental Illness: the perspectives of young carers, parents and
professionals will be published by The Policy Press in March
2003. A summary of the main findings can be obtained now from www.ccfr.org.uk 

– Saul Becker is professor of social policy and social care
and associate director, Centre for Child and Family Research,
Loughborough University. Jo Aldridge is a research fellow at the
centre.