There remains a pressing public health imperative to support CAPRI
Recent papers from the UK2 and Sweden147 provide robust indicators of the increasing prevalence of children with parental mental illness. These authors also suggest that more ill mothers are receiving treatment and this should improve the circumstances for their children. However, children’s needs must be distinguished from their parents’ needs, which are clearly quite different.42 Underlying environmental factors, such as poverty or violence in the home, are important additional sources of hardship for CAPRI.43,44 Similarly, the most common likely consequences, such as social and educational difficulties and reduced QoL,45 are unlikely to be addressed in the very limited services tailored to these young people. Mental health services (adult, child and adolescent) are available only at the point when children become ill themselves. Furthermore, we know that the absolute risk of developing SMI, even when both parents have a SMI diagnosis, is low;46 therefore, solely increasing mental health provision is unlikely to meet their needs over time.
Children and adolescents of parents with SMI are an easily identifiable group of at-risk young people. Reliable, detailed information about the numbers, ages, regional variation and types of illness to which they are exposed over time is vital for policy-makers, clinical commissioners, education and health service providers. In our minds, the increasing prevalence and lack of resources make clear the ongoing need for appropriate and timely approaches to support CAPRI QoL. Yet it is clear from our findings that HRQoL specifically is an inappropriate measure of these young people’s needs. Most are physically fit, so the questions on PedsQL or EuroQoL-5 Dimensions do not engage with the problems that they face. The lack of recognition of need in these children,49 combined with a gap in dedicated provision for them and growth in the number of mothers diagnosed and treated for mental illness over time, suggests that they are a substantial population with unmet needs but this does not appear to be accessed by measuring HRQoL. Future planned linkages to the hospital records of CAPRI will better describe their needs and provide valuable evidence of how to address them, which aligns well with UK Department of Health and Social Care initiatives to make health care more focused on prevention.48 These concerns should not be confined to the UK; this population is increasingly recognised as in need of greater attention and better support across the European region, and studies in North America and Australia have also demonstrated that many children are exposed to maternal mental illness.2 CAPRI represent a challenge to the global health community.
Interventions and support must take account of children’s concerns about stigma at the same time as recognising their particular needs and providing them with the care they require separately and independently from the care of their parents.50
Around 2.5 million children in the UK live with difficult family circumstances, such as poverty, poor parental mental health and addiction.2 Loss of preventative public health and early intervention provision from local authority commissioning alongside specialist CAMHS raising their thresholds and eligibility criteria to manage demand, as well as geographical variation in the availability of services, has led to increasing numbers of children, young people and families reaching crisis point.148,149
NHS England’s Implementing the Five Year Forward View for Mental Health86 places greater emphasis on prevention, integration of services and building the resilience of young people. The goal is to provide an extra 70,000 children with access to evidence-based interventions each year and move towards services that are tailored to the needs of the community. Identified areas of good practice from Future In Mind94 (guidance outlining aims for transforming how CAMHS are delivered nationally) include the need to involve CYP and their families and carers, where appropriate, at every level: from service design to commissioning, recruitment and decisions about care. The Department of Health and Social Care prioritises the creation of services that are sensitive to area, which engage across service boundaries, but also that work to reduce stigma for young people.
Our work fulfils most of these demands as well as the government’s 2018 requirement for services to respond to ACE and to focus on identifying risk and prevention.96 Addressing Adversity: Prioritising Adversity and Trauma-informed Care for Children and Young People in England96 presents the latest direction on how services can strengthen resilience and support recovery extending the Vulnerable Groups and Inequalities Task and Finish Group, co-chaired by the main author, Sarah Brennan, who served on the independent taskforce that created Future in Mind.94,96 The report seldom mentions CAPRI, but its recommendations clearly demonstrate that the Young SMILES intervention fits well into a wider national scheme on how services and organisations respond to ACE by investing in adversity-informed models of care. This includes building individual/social resources, wider resiliency and connections to support in the community. Importantly, we have also provided evidence that the Young SMILES intervention significantly aligned with parents’ value systems. They expressed a need for their children to have valuable ‘child time’, something that many felt was lacking as a direct result of their own mental illness.
A sum of £1.25B has now been made available by the government for child and adolescent mental health and, to access this, CCGs must develop a local transformation plan (LTP) showing how they will improve access to mental health provision for CYP. In many cases, local areas do not record potential risk factors such as parental mental illness, making early intervention difficult. Early intervention services have been the target of cuts as a result of financial constraints: only 1 in 10 local areas intended to commission a new service in their LTP.150
Within the current national context, therefore, we conclude that there is a strong argument that future development of the Young SMILES intervention represents a valuable, evidence-based, co-developed basis to preventative approaches in at-risk children. Referrers, service providers and facilitators in NHS-IAPT and in the third sector (e.g. NSPCC and Barnardo’s) provide clear evidence that the Young SMILES intervention fills an acknowledged gap in current provision across the sector. It was noted by multiple stakeholders that, although LTPs include new provision for CAMHS and tier 4 services, LTPs do not address need below a clinical threshold. CAPRI and parents both agreed that there remains a pressing need for intervention; and children particularly reinforced the positive experience of having something directed at them and for them. Children welcomed recognition of their role as carers and a focus on their needs rather than their parents’ needs. They relished the respite away from family and separate from school classrooms, as well as the relationships they could make with other young people experiencing similar difficulties. School referrers noted changes in children’s concentration in class, and greater happiness and less distress in children attending sessions.
Is a future trial feasible?
We have no doubt that the population of interest – CAPRI – remains in need of an intervention to improve their HRQoL. This small first-phase study has successfully developed an acceptable intervention with meaningful input from CYP and other stakeholders. Moreover, this intervention was successfully manualised, and staff from NHS and non-NHS settings were trained successfully to deliver it. We have also demonstrated the feasibility of recruiting and retaining families within this, especially CAPRI themselves.
However, we think a future RCT needs to reconsider both the outcome of interest and the mechanism of such delivery. The Young SMILES intervention needs more detailed specification for the facilitators to clarify what is and what is not within the intervention bounds. Recruitment pathways need revising: we believe that a future recruitment strategy should focus on primary care and NHS services including IAPT-CYP. We would also recommend social media and self-referral. We highly value the collaboration with NSPCC partners, but they have decided that further involvement is unlikely to fit their future service remit and priorities. There needs to be a formal process evaluation of what does and does not work within a structured but flexible intervention – possibly delivered, in part, through virtual workshops. A future trial delivery would see all Young SMILES intervention sessions recorded. This would include the possibility to analyse the ways in which people delivering the course use the balance between structure and tailoring; permitting standardisation without being prescriptive. Furthermore, the outcome specified in the original NIHR HTA programme call was HRQoL. In our relatively small sample of CAPRI, we did not find evidence of significantly reduced HRQoL at baseline. This belies the consistent evidence from population data of poor outcomes across a range of health and social domains for CAPRI. It is our concern that the standardised HRQoL measures available for the age groups studied were not fit for purpose to address the probably unmet need of these young people.
Recommendations for future research
Taken together, the reservations we outline above mean that we would not recommend that the evidence is sufficient for a fully powered trial of the Young SMILES intervention in the near future. In our view, the core outcome of the intervention should be reconsidered and either (1) a new measure of HRQoL should be co-developed that is sensitive to the challenges CAPRI tell us they face in their daily lives; or (2) a measure of unmet need should be developed as the primary outcome and then this should be used to inform further development of the intervention.
We also consider that future work in this domain should focus more on a digital approach as outlined above and in Chapter 8, Objective 3. This could include sessions with parents that are delivered via virtual workshops.
Of note, the original NIHR HTA commissioning brief called for consideration to be given to family socioeconomic status, and this may be particularly important. The number of mothers with mental illness being diagnosed in primary care in Britain today is considerable and significantly associated with area level deprivation and indices of poverty.7 In this sense, we feel that focusing our efforts in poorer northern regions of the UK is appropriate; London and South East regions have the lowest morbidity and highest level of services for vulnerable families and other services for vulnerable families. This includes the greatest provision of perinatal mental health specialist services and children’s services, for example Young Minds and Barnardo’s. This regional approach sits well with evidence from a recent mapping of mental health need and research activity.151
Providing mental health services is expensive, with most of the ongoing cost of mental health services being used to maintain a team of trained clinical staff to deliver a service and paying them to deliver it. We seek to develop a wholly different and much broader public health approach and one with a flexible, personalisable digital focus. A public health approach to the intervention may be best because most of these young people remain well most of the time, and so, although their absolute risks are low across outcomes (and most will remain resilient most of the time), consistent population estimates find their relative risk to be high across a range of outcomes compared with those without mentally ill parents. Thus, because the Young SMILES intervention expressly occupies a non-clinical domain, as CAPRI are often not mentally ill (only one in five children presenting to CAMHS is estimated to have a mentally ill parent in secondary care8), a public health approach to the intervention can be tailored to the changing needs of CAPRI, and can be agile to these needs so that it can respond to fluctuations over time.
We recognise the potential cost in QALYs that the absence of an intervention either to improve HRQoL or to meet the broader needs of CAPRI implies over time.152 We also recognise that CAPRI are a growing group of CYP at higher risk overall of developing illness and mental illness as adults than their peers who do not have a parent with a SMI. Although our intervention was designed to improve HRQoL in all children with mentally ill parents, irrespective of their own mental health status, the Young SMILES intervention will not be best placed within CAMHS – where children already have mental health or behavioural problems. We believe that any future approach to supporting these vulnerable young people is best set in schools, community services or adult CMHTs who look after mentally ill parents. Family therapy teams in the NHS that are part of adult CMHTs will be well placed to use any future intervention. Third-sector organisations that see young carers or children at risk of adversity will also be appropriate settings for a future Young SMILES intervention.