Child Abuse Review Children Vol.

15 Caring : 7988 for Parents (2006) with Mental Illness 79 Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/car.904

The Experiences of Children Living with and Caring for Parents with Mental Illness
This research provides a three-way perspective on the experiences and needs of children who are living with and caring for parents with severe and enduring mental illness. The views of children, parents and key workers were sought in order to provide deeper insight into the needs of families and the nature of interfamilial relationships, as well as the relationships between service users and providers. Child protection and medical research has long proposed a link between parental mental illness and the risk to children of abuse, neglect and developmental delay. The inevitability of risk associations is challenged by the research described here and outcomes for children of caring for parents with mental illness are discussed not simply in terms of risk to children but more broadly in respect of, for example, positive parent child relationships. Copyright 2006 John Wiley & Sons, Ltd. KEY WORDS: young carers; parental mental illness; parenting; parentication; parenting capacity

Jo Aldridge*
Young Carers Research Group Loughborough University, UK

The views of children, parents and key workers were sought

t is estimated that there are about 175 000 children in the UK who provide care and support for parents (or other relatives) in the home with chronic illness or disability (see Becker, 2004). Growing numbers of these childrenwho are more commonly described in research as young carers will be caring for parents with serious mental health problems (Aldridge and Becker, 2003). The experiences and needs of young carers have been highlighted over the years in a number of research studies and by campaign groups such as Carers UK and The Childrens Society. However, as Doran et al. (2003) have argued, what has been missing from research in this eld is deeper insight from qualitative studies about childrens experiences of caring for parents with mental illness, which should be used to develop policy.

Correspondence to: Dr Jo Aldridge, Young Carers Research Group, Department of Social Sciences, Loughborough University, Loughborough, Leicestershire, LE11 3TU, UK. Tel: 01509 223670. Fax: 01509 223944. E-mail: J.Aldridge@lboro.ac.uk Copyright 2006 John Wiley & Sons, Ltd.

What has been missing from research in this eld is deeper insight from qualitative studies

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Children need to feel able and willing to discuss their experiences openly

The average age of the young carers was 12

Copyright 2006 John Wiley & Sons, Ltd.

My own research in this eld has used just such qualitative approaches and highlights the needs of families when parents have serious mental health problems (Aldridge and Becker, 2003). In this study, conducted by members of the Young Carers Research Group (YCRG) at Loughborough University, 40 parents who had been diagnosed with a severe and enduring mental health problem (and who were on the Care Programme Approach), their children who were providing care and 40 key workers (50% statutory mental health service professionals, 20% child and family services and 30% young carers project workers) took part in a two-phase qualitative study that examined in detail the experiences of all three respondent groups. We looked at parents experiences of formal and informal care provision, childrens experiences of caring and co-residency and the nature and extent of service delivery and support. The sample families were identied through young carers projects, of which there are more than 140 across the UK. It was appropriate to use qualitative methods in the study, particularly as it aimed to elicit information from young and vulnerable children who were living with and caring for parents with mental illness. In these contexts, questionnaire surveys or health and wellbeing measures are often unsuccessful because children need to feel able and willing to discuss their experiences openly. As such, one-to-one interview techniques, in which relationships of trust can be developed between the researcher and interviewee, often generate richer data. It is widely acknowledged that research which purports to be about families often centres on parents and parenting issues and overlooks the experiences and views of children (see Alderson, 1995). Furthermore, those studies that claim to investigate parenting tend to focus largely on maternal responsibility and/or decit. These same gender issues are also pertinent in respect of the research evidence on children with care responsibilities and their families (see Becker et al., 1998). Looking at the factors that inuence whether children are likely to take on care responsibilities in the home, a childs gender (being female) and having a mother who is ill, who is also a lone parent and is not in paid work are all factors that increase the chances that a child will be taking on care responsibilities that may, in time, become long term or disproportionate to their age and level of maturity. In the YCRG study, 87% of the sample of parents were mothers (with depression or bipolar disorder) who were being cared for mainly by their daughters (92%). The average age of the young carers was 12.
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The types of responsibilities children undertake when they care vary depending on the nature of parents illness or disability and the availability of other informal and formal support and assistance. Research tells us that children undertake a variety of tasks, from basic, domestic duties (washing up, housework, etc.) to intimate, nursing type responsibilities, including toileting and bathing parents (Aldridge and Becker, 1993a, 1994; Dearden and Becker, 1998, 2004). The debate about what constitutes appropriate care responsibility among children has tended to focus on the latter, that is, the unacceptable face (Meredith, 1991) of childrens caring responsibility is identied as the provision of intimate caring tasks we would usually associate with adulthood. To date, research that has looked at the impacts of parental mental ill health on children has usually centred on child protection or health and medical factors and has emphasized, in the main, detrimental outcomes for children and families (see Buck and Hohmann, 1983; Falkov, 1997; OHagan, 1993). Further, studies in these elds have tended to omit the accounts of children themselves (see Kellet, 2004), or have focused on the impacts of parental mental illness combined with other health and social problems (Cleaver et al., 1999).

The Nature of Childrens Caring Responsibilities What is clear from the YCRG study is that children who care for parents with serious mental health problems, while undertaking many of the tasks other children do whose parents have physical health problems or disabilities, also take on a great deal of what can be perceived as emotional care responsibilities. Thus, children often provide critical crisis support being there when parents experience sudden downturns in their mental health, for example during episodes of selfharming or psychosisas well as monitoring and assessing parents emotional health and wellbeing and, in some cases, overseeing the safe and regular administration of prescriptive drugs. Sometimes, simply by being there through their coresidency with parents and willingness to care, children are also providing crucial preventive interventions, as the following examples illustrate:
He [son/young carer] just stops with me, you know, he gives me what I need . . . I dont like being on my own . . . hes saved me quite a few times (mother with depression)
Copyright 2006 John Wiley & Sons, Ltd.

Studies in these elds have tended to omit the accounts of children themselves

Children are also providing crucial preventive interventions

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Theres, if youre helping her [mum] and that, say shes emotionally like, erm, ill, I like make her laugh and that, and shell start laughing, well have a laugh and a joke and that. Shell forget all about it, and then I know Ive helped. Or when shes struggling, I know I can help her (boy who cares for his mother, who has bipolar disorder)

Evidence from this study suggests that young caring is not simply indicative of role transference between children and parents

Previous research, particularly medical and psychiatric studies, has suggested that care giving among children is characteristic of the parentication of childrens roles. This has been described in psychiatry as an attachment disorder (see Chase, 1999). Indeed, some of the early research on young caring also suggested that care giving by children was indicative of parenting turned on its head, or of role reversal (Aldridge and Becker, 1993b). However, evidence from this study suggests that young caring is not simply indicative of role transference between children and parents. While role adaptation undoubtedly occurs when children care, particularly when parents are incapacitated by their illness and are thus unable to manage household duties and sometimes even child care responsibilities, ndings from this study indicate that parents continue to retain the status of parenting, if not always the physical ability to parent in practical terms. As one parent explained, I like [my son] being there, hes my son rst and Im his mother. Its right like that. Further, childrens perceptions of parenting seem to be relatively unaffected by their own, often temporary, role adaptations; as one 14-year-old young carer said, Shes still, yeah, shes still around to be like a mum. Another commented, I still know that my mums my mum and I get in trouble all the time. I get told off you know for having a messy bedroom.

Positive Outcomes for Children As well as challenging theories about role reversal among children when they care, this research also challenges the assumptions that are often made, particularly in child protection work, that children are at inevitable risk of harm or developmental delay when parents have mental illness. The long-term effects on children of living with and caring for parents with serious mental health problems may not be fully understood, particularly in respect of psychological outcomes. However, from the interviews with the children, parents and key workers in this study, no evidence was found of physical harm or neglect of children by parents, even when these parents were self-harming or regularly attempted suicide (factors which usually set alarm bells ringing among health and social care practitioners).
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No evidence was found of physical harm or neglect of children by parents

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This evidence suggests that children are not at inevitable risk of harm, neglect or developmental delay simply on the basis of their parents mental illness, nor that there will be a necessarily negative impact on parentchild relationships (see also Falkov, 1998). The ndings do underline the importance of interdependency within those relationships, as well as the fact that, at times, caring can help to reinforce the bonds between children and parents. Gpfert et al. (1996) have also argued:
It may be easy to lose sight of the fact that any child will at times worry about his/her parents. In the case of mentally ill parents it is the right of children to deal with such worries by caring for their parent (p. 282)

The ndings do underline the importance of interdependency within those relationships

What is clear is that childrens development and childhood experiences can be adversely affected when caring becomes long term and disproportionate, that is, where the onset of practical and emotional responsibility is not congruent with a childs age and level of maturity and understanding. And a critical factor that inuences the onset and extent of care responsibility among children is the type and adequacy of health and social care interventions. While debate has tended to focus on the rights and wrongs of young caring and what constitutes unacceptable care responsibility among children (see Aldridge and Wates, 2005; Keith and Morris, 1995; Meredith, 1991), it is clear that when parents are sick, disabled or have serious mental health problems, interventions of any kind will continue to be ineffective if:

Critical factor that inuences the onset and extent of care responsibility among children

They do not address the needs of families They emphasize parenting capacity They do not give due recognition (see Aldridge and Wates, 2005) to childrens experiences, needs and contributions

The Needs of Families Some disability rights commentators have argued that children would not have to care if their ill or disabled parents received comprehensive support services (Morris, 1995; Olsen, 1996). The parents in this study were all in receipt of multidisciplinary support services, mainly from community mental health teams. However, such assistance rarely included parental support or interventions aimed at families. The onset and continuation of care by children occurred, in the main, because children were available to care through co-residency, willingness or obligation and because they could provide more consistent, exible
Copyright 2006 John Wiley & Sons, Ltd.

Because children were available to care

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Mental health workers often do not know whether or not their patients have any children

Uncertainty, on the part of practitioners, about how to interpret policy and implement effective assessments

and long-term assistanceaspects of intervention that were missing from health and social care services. In most cases, even where health and social care professionals were visiting the family home, childrens contributions and needs were overlooked or discounted. This was not necessarily a deliberate oversight, but appeared to be due to a lack of recognition of the triggers for the contexts in which young caring occurs and an unwillingness to consider the experiences and needs of families. This also points to a narrow, patientoriented perspective, which has also been recognized in other, psychiatric research. As Gpfert et al. (1996) argue, it is a common experience that adult psychiatrists and mental health workers often do not know whether or not their patients have any children (p. 273). Uncertainty about professional responsibility and accountability, and in some cases the heavy caseloads of practitioners, meant that many health and social care professionals were unable to consider the needs of families and children in their work with mentally ill parents. As one community psychiatric nurse (CPN) in the YCRG study said, A lot of the generic CPNs in this area have caseloads of upwards of 50 to 60 people. However, the needs of young carers are now included in UK health and social care policy, guidance and practice. For example, the Framework for the Assessment of Children in Need and their Families (Department of Health, 2000) and Care Programme Approach guidance both make references to young carers. The ongoing lack of assessment of young carers needs (see Dearden and Becker, 2004) is due in part to the uncertainty, on the part of practitioners, about how to interpret policy and implement effective assessments for children with care responsibilities (see Aldridge and Becker, 2001). Findings from this study also indicate that when parents have serious mental health problems, this oversight is also due to a lack of understanding about the impacts of mental illness on parents and children, and the needs of both.

Parenting Capacity Assessing parenting capacity remains a fundamental motif of current guidance on the assessment of children in need and their families (Horwath, 2000). However, measuring parenting capacity is rarely straightforward and relies on the understanding and ability of professionals to make judgements about parenting and childrens needs based on criteria such as the nature of parentchild relationships, parental characteristics
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and parents abilities to empathize or prioritize childrens needs (Gough and Stanley, 2004). However, when we apply any of these measures to parents who have serious mental health problems, then we can see how parenting capacity can in itself serve to undermine parents in these contexts. As Gpfert et al. (1996) have argued, assessment of parenting capacity fundamentally carries the message that the parents arent good enough (p. 277). Zetlin et al. (1985) have further argued that assessing parents often relies on middle-class assumptions about appropriate standards of domesticity and hygiene. All too often, it seems, these assumptions tend to focus on maternal responsibility and decit. The YCRG study only conrmed these propositions, as the following account from a social worker in adult services illustrates:
The actual sort of standard to which the house is kept is lower than one would like. Two years ago it got absolutely dreadful. She [mother] really got depressed, she was having problems with the neighbour, and the house completely went to pieces, it was quite disgusting . . . the new house has stayed reasonably, erm, within tolerable limits.

Assessment of parenting capacity fundamentally carries the message that the parents arent good enough

Furthermore, the ndings suggest that what an assessment of parenting capacity may also overlook when applied to parents with serious mental health problems is the fact that parents ability or capacity to parent effectively is both mutable and perceived by parents themselves (during those times when they are able to be reective) to be ineffective at times. However, what prevents adults with mental health problems from seeking parenting support is their fear of child protection procedures and professional interventions that only serve to further undermine parenting roles (see also Meredith, 1991).

Recognizing Childrens Contributions and Needs A consistent and recurrent message from research on young caring has been that parental illness or disability should be seen as a trigger for the potential onset or continuation of care responsibility among children (see Becker et al., 1998; Aldridge and Becker, 2003). This is not to suggest that all children of parents with illness or disability will be young carers. Research in this area refers to a relatively small subgroup of vulnerable children whose caring responsibilities may be inappropriate or damaging in terms of their childhood experiences and development, as well as their successful transitions into adulthood (Dearden and Becker, 2000).
Copyright 2006 John Wiley & Sons, Ltd.

Their fear of child protection procedures and professional interventions that only serve to further undermine parenting roles

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Children also want recognition for what they do

Children who care require support for themselves as well as assistance in helping them cope with their parents illness and care needs, but children also want recognition for what they do. Talking as an adult about her childhood caring experiences, Marlowe (1996) has said:
To think of myself as having been a young carer helped me to realise how much I had done to support my family. Previously this role had been unrecognised, taken for granted and undened ( p. 103)

In many instances, childrens needs are often relatively modest

In order to avoid an over-reliance or emphasis on assessment of parenting capacity when parents have serious mental health problems, and in order to successfully meet the needs of children when they are living with and caring for mentally ill parents, it would be advantageous to identify, understand and assess the needs of both. Thus, recommendations from my own research in this eld focus on monitoring and mapping the experiences of children and parents using a systemic approach (see Aldridge and Becker, 2003, pp. 137151). Such an approachone which views children and families in the many different contexts of which they are part (Schuff and Asen, 1996, p. 135)would facilitate a more empathic approach to parental mental illness, as well as childrens/young carers experiences. Mental illness occurs and is sustained as a result of a number of inuences, including genetic predisposition and precipitous and enduring factors. Recognizing these inuences in respect of parents with mental health problems as well as the experiences and needs of children using a systemic approach would ensure that the needs of families in these contexts are more readily understood and accommodated. While not discounting the need for child protection interventions in some extreme cases, in many instances, childrens needs (as children and as carers) are often relatively modest, even when parents have severe and enduring mental health problems. Often, the needs of children in these contexts can be accommodated by, for example, referral to dedicated services such as those provided by young carers projects. Both children and parents alike value services such as those offered by young carers projects. Initially, these projects offered mainly respite care and leisure activities for children who had little opportunity to socialize with other children outside school and home. Increasingly, however, projects offer a broad range of support services including one-to-one befriending schemes, homework clubs and support to families. Sometimes, children and parents require regular contact with project workers, whether through home visits or by phone. As one young
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carers project worker in this study commented, sometimes this doesnt take much. Sometimes all thats needed is just a veminute phone call.

Note
A summary of the research, Evidence Issue 5: Children Caring for Parents with Severe and Enduring Mental Illness, is available from the Young Carers Research Group. Tel: 01509 223670 or visit the website: www.ycrg.org.uk

Sometimes all thats needed is just a ve-minute phone call

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