Genetic and environment interactions

Many children will have heard comments about mental illness such as that ‘it runs in families’. Subsequent comments and discussions, even by well-meaning adult family members and friends, as well as peers, commonly compound the child's fear and confusion about their own predisposition to develop a similar illness to their parent. The aggregated data suggest that if a child has two parents with mental illness they have a 30–50% chance of becoming seriously mentally ill (Reference Rubovits, Göpfert, Webster and SeemanRubovits 1996), and a child with an affectively ill parent has a 40% chance of developing affective disorder by age 20, compared with a 20–25% risk in the general population (Reference Beardslee, Bemporad and KellerBeardslee 1983; Royal College of Psychiatrists 2011).

However, although some mental illnesses have been shown to be associated with an inheritable vulnerability, Reference Rutter and SilbergRutter & Silberg (2002) have stressed that gene–environment interactions are as important as direct genetic effects. Particular factors in the child's environment have been shown to significantly mitigate against their risk of developing mental illness. At the extreme end, these include adoption, depending on the quality of the adoptive family. The Finnish adoption study (Reference Tienari, Sorri and LahtiTienari 1985, Reference Tienari, Wynne and Moring1994, Reference Tienari, Wynne and Sorri2004) has demonstrated that a high-quality care environment can offer a significant degree of protection even to children with a high genetic predisposition to schizophrenia.

Offering an explanation

On the other hand, quite small interventions have been shown to increase children's resilience in ways that can provide them with a significant degree of protection. A number of studies suggest that the resilience of children and young people is significantly enhanced when they receive clear and understandable information about the sources of their adverse experiences (Reference KoocherKoocher 1974; Reference Rosenheim and ReicherRosenheim 1985, Reference Rosenheim and Reicher1986; Reference RutterRutter 1999; Reference DyregrovDyregrov, 2001, Reference Dyregrov2010; Reference BostockBostock 2004), and many reports confirm the positive benefits of a neutral, caring adult helping the child to appraise their situation more objectively (Reference Quinton and RutterQuinton 1984; Reference ShachnowShachnow 1987; Reference RutterRutter 1966, Reference Rutter, Rolf, Masten and Cicchetti1990; Reference CowlingCowling 1999). A small study by Reference Falcov, Ward and RoseFalcov (1999, Reference Falcov and Cowling2004) demonstrated that children who had received just a good explanation of their parent's mental illness scored lower for ‘caseness’ or signs of disturbance in themselves on objective measures compared with a control group who had received no explanation. In the resilience research (cited above), holding the belief that there is something one can do to manage one's feelings and ‘cope’ has been found to be a significant factor in the promotion of psychological resilience. Such a ‘belief’ requires that one has a good understanding of the source of the adversity which one is enduring.

However, questions about how, when, where and by whom this explanation is to be delivered is often the sticking point. Despite the now statutory requirement that all mental health services in the UK ensure (and audit) that the views of children and young people about the care plans for their parent's treatment are elicited, relatively few children and young people are talked with directly about the nature of their parent's illness.

I therefore invite mental health staff to focus on what they can and should do to assist this group of children and young people by helping them with their own thinking, understanding and feeling about their parent's illness and their own responses, rather than focusing only on structuring or monitoring the child's environment. Although an assessment of a child's resilience in this context has to be principally based on the child's own perception of their well-being and capacity to cope, equipping them with greater knowledge and understanding of their parent's illness is a significant factor in promoting that resilience.

Professionals faced with concern about the fate of these children may sometimes offer therapy or counselling to a child without first exploring the child's own thinking and opinions about what this may mean to them. Many of the children in the Kidstime project, as well as reports from the Barnardo's group (Reference Bilsborough, Göpfert, Webster and SeemanBilsborough 2004), have challenged the common assumptions of some professionals that children might need greater access to counselling and other therapeutic resources. These children have stressed that they want to see a greater awareness of their needs and problems in the minds of both the professionals and the public, rather than themselves being singled out for ‘some form of therapy or counselling’. This of course does not mean that some children will not need or want therapeutic intervention, either with their family or on their own, at some point in the future. However, an offer of therapy as a first response may seriously misjudge the child's perception of their predicament. For example, a child's role as carer has meant that they may have had to take on great responsibility for family matters which they need to have acknowledged. Therefore, the response of professionals needs to be more that of a friendly ‘colleague’ or a respectful uncle or aunt, than the formal and inevitably hierarchical role in which a therapist or counsellor may be perceived by the child.

Children identifying with the ill parent

Many children who have a mentally ill parent strongly identify with that parent: they see themselves in and model themselves on the parent. Of course, most developing young people identify with the parent of the same gender, but if a parent has a mental illness the identification is likely to be enhanced and to cross gender boundaries. A child who is concerned about and preoccupied with an ill parent is likely also to become preoccupied with the details and nuances of that parent's thinking and behaviour. As the child's mind is filled with thoughts about the parent, they may become hyper-alert to the slightest similarity between the parent's thinking and feelings and their own. Although many children in this situation may say that they are determined not to become like the ill parent, this statement is often itself predicated on an assumption that this may occur. Thus the child or young person may need to be helped to separate from some aspects of the parent's mindset before they can adequately engage in their own thinking. The kinds of explanatory discussions described later in this article are targeted at helping the child or young person to achieve some distance from the parent's emotional life and behaviour so that they can develop their own thinking. Offers of therapy or counselling may be misconstrued as confirmation that the child will follow in the parent's – ill – footsteps. This has to be distinguished from the need for someone to talk to, as identified by Reference ShachnowShachnow (1987), Reference Quinton and RutterQuinton & Rutter (1984) and Reference CowlingCowling (1999), the offer of which can often be introduced in the course of an ‘explanatory’ discussion.

Therefore in the range of interventions presented here, a key focus will be the role of explanations discussed with the child.

Parental mental illness and the interruption of key developmental processes

Recent evidence from practitioners of Marte Meo educational counselling (Reference Øvreeide and HafstadØvreeide 2011) has confirmed the findings of earlier studies (Reference Trevarthen and BullowaTrevarthen 1979, Reference Trevarthen and Neisser1993, 2001) that the congruence of early verbal and non-verbal responses of a child's primary carer is critical in the child's development of a capacity to label their own emotions and responses. This is almost synonymous with the development of a capacity for mentalisation (Reference Sharp, Fonagy, Sharp, Fonagy and GoodyerSharp 2008). When a parent reacts with withdrawal or with ambiguous responses to a child's early overtures, this developmental process can be seriously interrupted, and a pattern of parent–child interaction may ensue which further detracts from the child's ability to think about emotional relationships, rather than just react to them in an often erratic and impulsive manner.

Engaging children in understandable discourses with the ill parent, as well as with others, can be a first step in promoting the child's mentalising ability. Although explanation of the parent's illness with the child has been repeatedly stressed in this article, it is not a single end goal. Explanation, as a platform of discussion, opens a whole range of discussions about relationships in general, as well as specifically about the parent's illness. Within that ‘educational’ framework, a child can feel freed up to think about many wider issues in family relationships and thinking. On the other hand, common intervention strategies directed solely at the illness of the parent have been reported to compound the difficulties experienced by some children in developing this capacity, particularly if they are offered no explanation or an explanation which is incongruent to their experience (Cooklin 2006c).

The beginnings of a capacity for mentalisation, as well as the cognitive ability to understand and retain an explanation, are also going to be affected by the child's neuropsychological development, as well as the environmental experiences which will have impinged on the latter (Reference Fonagy, György and JuristFonagy 2004; Reference McCrory, De Brito and VidingMcCrory 2010). In the 150 children and young people seen in the Kidstime programme, children who were either pre-verbal or had poorly developed language skills at the time of, for example, their parent's first hospital admission, seemed to continue to manifest higher levels of anxiety about the ill parent. Despite being subsequently able to learn and comprehend an explanation of the illness, they often seemed unable to connect this to their earlier experience which was without a scaffold of words (further details available from the author on request).

The need for a child to learn to identify their own emotions and experiences is universal across all social contexts and cultures. However, their opportunities to achieve this will be dependent on their age, abilities, culture and family form:

1. • a child with a good relationship with a ‘non-ill’ parent may be significantly protected from this problem;

2. • good relationships with siblings may also offer a significant protective factor;

3. • in cultures in which children are not encouraged to express their feelings, the child may be particularly dependent on an outside supportive adult (such as a teacher or young carer's worker) to overcome this potential deficit;

4. • a child with well-developed language skills, particularly if they are in a context where these can be used, such as a young carer's group, will have more potential to develop resilience than a more isolated child with poor or undeveloped language skills.

Invasion of the child's thinking

Although no argument is needed to suggest that it will be detrimental for children to take on the delusions expressed by an ill parent, it is as much, if not more so, the process whereby these delusions are adopted by the child which place the child at emotional and developmental risk, rather than the content of the delusions themselves. Although a ‘folie a deux’ represented in truly fixed delusions would be rare, many children and young people have reported that in times of acute stress and confusion they have ‘seen’ what their parent may have described, adding ‘even though I knew it wasn't there’. The content may be foreboding or frightening, such as claims that an evil process (e.g. the Devil) is controlling events, or it may engender an overall fearsome and suspicious stance by the child when, for example, a parent claims that they are being watched, or that their thoughts are being read by the television, the police or the government. However, for a child to adopt such views may depend on several factors such as those listed in Box 3 (see also the fictitious vignette in Box 4).

In the vignette in Box 4, it is unlikely that the children actually took on or experienced the mother's delusions. It rather suggests a survival strategy adopted by the girls, which meant that they temporarily took on their mother's overall belief system when it conflicted with the beliefs of others. Naturally, the mother's threatening behaviour as well as the daughters' concern for her, will have greatly heightened their level of anxiety, which in turn would push them towards such a strategy.

A similar strategy is described by Carly (then aged 20 and with twins of her own) in the teaching film Being Seen and Heard (Cooklin 2006c). She describes being woken in the early hours by her mother, claiming that her body was covered in bugs. Although Carly states on camera that ‘We got so confused we could even see them’, she later clarifies this statement as feeling that their minds were taken over by their mother's to the degree that they would believe that they saw whatever their mother told them – ‘although I knew they weren't really there.’

Social, societal and educational interventions

As already stated, these are not the focus of this article but are nevertheless very important and necessary in diminishing stigma by increasing public and school awareness of, and knowledge about, mental illness. As several of the more vociferous members of the Kidstime project have stressed, it is an increase in this awareness as well as of the effects of both the illness and the stigma on the children of parents with mental illness which they need rather than therapy for themselves.

Family interventions

Family interventions aim to acknowledge the child's role within the family, specifically in relation to the ill parent and their illness.

Family work or family therapy is beginning to become more available within, or attached to, adult mental health services. However, the main approaches have been directed at either helping the non-ill family members to solve problems of managing the illness (Reference Falloon, Boyd and McGillFalloon 1984), or at modifying the family environment as a means to diminishing the likelihood of relapse in the ill member (Reference Anderson, Hogarty and ReissAnderson 1980; Reference FaddenFadden 1997; Reference Leff, Berkowitz and ShavitLeff 1990; Reference McFarlaneMcFarlane 2002). In these approaches the most vulnerable members of the family – the children – have generally not been included in the thinking about the family, and in fact the children may not be included at all. Burbach and his colleagues have developed a county-wide service in the UK in which the ‘problem-solving’ approaches developed by writers such as Anderson, Fadden, and McFarlane, cited above have been combined with a systemic understanding of the family and its development (Reference BurbachBurbach 1996).

A number of systemically oriented family therapists have reported on specific therapeutic projects which have included the children (Reference Fredman, Fuggle, Reder, McClure and JolleyFredman 2000; Reference Daniel, Wren, Vetere and DowlingDaniel 2005). However, although these approaches have addressed family relationships and how these relationships can accommodate the impact of mental illness, in general they have focused on the impact of particular parental behaviours and the possible meanings which family members may ascribe to these, rather than on explanation of the illness and its consequences. In the past, some therapists have even been coy about fully acknowledging the reality of the illness in the service, avoiding ‘labelling’ the patient. Although this attitude may be seen as a way to respect the integrity of the ill member, it can in fact be counterproductive for children, as it can deprive them of a tangible entity on which to base their confused experiences.

Direct interventions for the child

This may include ensuring that the child is supported in school by recognising their dilemma if, for example, they are often absent or late as a result of parental demands. It may also include providing a mentor or counsellor for the child. However, in this article the dangers of offering counselling – unless the child has explicitly accepted the idea of therapeutic help for them – have been stressed, because this may increase the child's unwelcome sense of identification with the ill parent, and also may be seen by the child as defining them as on a similar pathway to the ill parent. Mentors or ‘befriending’ projects do not have this disadvantage and can be particularly helpful.

A very positive intervention which can be offered by schools, and which has so far been very successfully implemented in a small number of secondary schools, is a weekly support group specifically for children and young people who have a parent with mental illness (BBC Three 2010; R. McCall & F. Dix, personal communication, 2011). This is often arranged during the lunch hour and is not perceived as therapy. The sharing of experiences leads to many children feeling less isolated and therefore less subjected to stigma. It can also help them to resist and support each other against any bullying about their ‘mad parent’ to which they are often subjected.

Who should do it?

Some adult mental health staff may see all the above as outside their expertise or responsibility, and is therefore the province of ‘someone else's responsibility’. The problem is that a similar view is often held by all in the different health and social care fields, and although community mental health workers may often not see the children because they are at school when they visit, a greater awareness of the children's needs could encourage them to visit in the after-school window of 15.30–17.00 h. Reference DunnDunn (1993) demonstrated that at the time of the study there was evidence of consistent underreporting of both physical abuse and neglect by – as well as in respect of – this group of children. Although this is an old study, it has not to my knowledge been replicated, and many young carer's groups report that children often do not trust the available services and will try to hide their parent's problems or disturbed behaviour. A significant proportion of children continue to be missed by the safeguarding services, principally because these children become adept at hiding sources of concern in favour of loyalty to the family. Furthermore, most local authorities may be handicapped by a combination of a lack of information about and understanding of mental illness and its possible role in subjecting children to emotional abuse, together with uncertainty about how to intervene. They may in turn assume that such intervention will be provided by CAMHS. In reality, CAMHS will see a tiny proportion of the children affected by parental mental illness, few of whom will meet their referral criteria. As already discussed, most children in this category will be highly resistant to referral to a mental health service.

In fact, it may often be the case that only adult mental health staff will be in a position to sufficiently explain the nature of the parent's illness. Although this article is not suggesting that adult mental health staff become ‘children's’ workers, there are a number of roles in which only they may be able to adequately contribute (Box 5).

Young carer's groups

There are now approximately 350 young carer's groups operating in England and Wales. Many are generic – that is, they cater for children who are carers of parents with all illnesses. A smaller number are specifically for children of parents with mental illness. There can be a problem with this lack of differentiation, in that children of parents with mental illness rarely receive proper recognition for their contribution from the ill parent, and may even be blamed for causing the illness. In addition, these children will often experience severe disruption of their attachment relationships with the ill parent, which is unlikely to occur in the case of parental physical illness.

Nevertheless, young carers' groups often offer the only respite and freedom from the caring role, and many children have described them as ‘lifesaving’. Groups usually meet weekly, and offer fun activities such as going skating, swimming or to the cinema. They also act as a social reference group in which the children can identify with each other and share experiences, as well as providing discussion or outreach intervention to varying degrees.

The main weakness of these groups is that often the workers find it difficult to adequately liaise with mental health services, and therefore cannot (or feel that they cannot) offer a substantive explanation to the children and young people. This is often compounded by common attitudes in mental health teams or in-patient services, where the staff may see themselves as solely ‘the patient's person’. Adult mental health teams may as a result be reticent about offering adequate information on the grounds that they believe it will compromise the confidentiality due to their patient. This is one reason why it is particularly important that mental health services reach out as outlined under ‘Direct intervention for the child’.

Young carer's groups are commonly run by voluntary bodies, such as Family Action or the Princess Royal Trust for Carers, but funded by local authorities. The Children's Society offers a coordinating function and runs an annual residential Young Carers Festival.

Few of these projects offer direct intervention between the young person, the ill parent and their illness. They are therefore unlikely to engage parents to a significant degree, particularly in relation to helping the child gain an adequate understanding of the illness.

The Kidstime project

The Kidstime project in Camden and Islington has developed over the past 12 years (Reference Cooklin and McClureCooklin 2005, Reference Cooklin and Combrinck-Graham2006a,Reference Cooklinb, Reference Cooklin and Combrinck-Graham2006, Reference Cooklin, Balmer and Hart2010, Reference Cooklin, Bishop and Francis2012). As part of the evaluation of the initial project, two other projects (in Hackney and Westminster) have been developed during the past 2 years. The goals of these projects are the following.

1. • To help the children and young people to gain understandable explanations of their parents' mental illness and the behaviour in the parent which may be associated with this.

2. • To address the children's various fears, confusion and lack of knowledge about mental illness and its treatment.

3. • To help the parents who have mental illness to find a medium within which the illness and its impact can be discussed between themselves and their children.

4. • To help the parents to access or rediscover their pride, confidence and competencies as parents.

5. • To help the children to experience their parents responding in a more positive manner.

6. • To encourage the children and young people to feel freer to engage in pleasurable age-appropriate activities.

The Kidstime project workshops originated in 1999, partly as a result of the experiences of similar workshops for adults and their relatives over the previous 10 years (Reference Bishop, Clilverd and CooklinBishop 2002). Bishop et al had noted that nearly all interventions for the families of patients with mental illness were exclusively concerned with the adults, and that the most vulnerable members of the family – the children – were largely ignored. The workshops were originally called ‘What Shall We Tell the Children’, as an expression of the discomfort which many parents felt about the task of trying to explain their mental illness to their children. The workshops were later renamed Kidstime – a suggestion from some of the child participants – as a recognition of the primacy of the needs of the children to be addressed in the workshops. As the workshops developed, both the children and the parents participated in the production of the training film Being Seen and Heard (Cooklin 2006c) and the children later participated in an ‘explanatory’ short internet film (Reference Cooklin and NjokuCooklin 2009).

The workshops, which are for children and young people who have a parent/s with mental illnesses – together with their parents – are held monthly. They are run by a team of mental healthcare workers, social care workers, a children's drama practitioner and voluntary workers, and last 2.5 h after school. They begin with a short seminar for the children and parents together, in which some aspect of mental illness, or questions about it, are discussed. This is followed by separate groups for the children and for the parents. The children's group starts with games and warm-up exercises, then the children tell stories about family life, commonly prompted by the seminar. They are helped to dramatise these stories and the resulting plays are filmed. The parents and children then gather as a single group to eat pizza and watch the filmed plays. Finally, there is a group discussion of what the children have produced and of issues raised in the parents' group.

Outreach work for individual families is also provided by the projects, particularly in response to matters which have been elicited during a particular workshop. Details of the operation of the workshops are provided in the manual (Reference CooklinCooklin 2011) and an initial evaluation (Reference Martin, Hoffman and NolasMartin 2011).

The Kidstime project can accommodate about 8–9 families per session, but as some families come for short periods and may return for a few sessions, about 15 families can be worked with by the project at any one time. Although the work is focused particularly on the child's understanding and the parent's support for that understanding in the context of the family relationships, there is also close liaison with local young carer's programmes. These are complementary in that they can expand the child's ‘out of family’ experiences and further promote peer relations.

Other multifamily approaches

Reports of other multifamily approaches that focus on the parents and the children together, and therefore on their relationships with each other as well as with the illness, are few. Valdez et al (2010) have reported a pilot study of the ‘Keeping Families Strong’ intervention for families in which the mothers have depression, using predominantly cognitive–behavioural techniques. Explanation of the illness does not appear to be a prime focus of this intervention, partly because they mainly work with very young children.