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 psycho-social 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

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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:

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:

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/digitalasset/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).http://professionals.carers.org/young-carers/

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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 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)

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.

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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 the membership is very broad with members including, for example, child and adult psychiatrists; managers and practitioners from children’s and adults’ social care;

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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.

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