Abstract
Introduction
Community paediatricians in the London borough of Southwark (and in most of England) complete Initial Health Assessments for Looked After Children with a wide focus on health, development and emotional well-being. For children who go on to be adopted, the medical advisor, usually a community paediatrician, plays an important role in liaising with prospective adoptive parents about the child’s health and development, including how background and family history may have influenced him or her.
The involvement of the community paediatric looked after children’s team routinely stops after adoption. Yet it is widely understood that while a permanent home offers the best outcome for the future of the child (as well as joy to many of the adoptive families), a considerable number of children will continue to have challenges with health, behaviour and development that may evolve over time. Anecdotally, and in our experience locally, many children are referred back to community paediatrics with problems that significantly impact on them and their adoptive family, including behavioural and developmental conditions, social communication and interaction difficulties, sleep disturbance and enuresis. We believe the scale of this has not been appreciated within health commissioning.
There is a wider awareness of the need for specialist support post-adoption. For example, the Adoption Support Fund provides additional funding for therapeutic support. There is also additional funding for educational provision, including support to prioritise the families’ first preference school.
A National Children’s Bureau (NCB) publication has highlighted that children adopted because of neglect in the UK have a high prevalence of emotional, social and mental health needs that can be difficult to identify and understand (National Children’s Bureau, 2018). The NCB report argues for robust pre-adoption support, with parents interviewed advocating for open contact with their medical advisor after adoption. The authors argue for holistic, multidisciplinary (including social care, education and health) approaches, and in favour of offering flexibility to families from professionals familiar with adoption and the local services available.
A recent review of 20 successive young people referred to the National Adoption and Fostering team at the Maudsley Hospital highlighted significant under-recognition of behavioural, neurodevelopmental, mood and elimination disorders (Woolgar, Pinto and Tomaselli, 2018). In his March 2018 briefing to CoramBAAF, Dr Woolgar highlighted the importance of the Adoption Support Fund but reinforced the need for the development of a more robust interdisciplinary perspective on the challenges facing adopted and special guardianship children, with assessments properly informed by experience and expertise, and the resulting provision of a coherent, evidence-based response.
To begin to look at the scale of this under-appreciated need within our service area, we performed a review of 40 children adopted from Southwark’s looked after children population in 2012‒2013 and 2013‒2014 (many now aged six to eight years). The first part of the evaluation looked at the characteristics of the children and their risk factors for future difficulties. The second examined which of these children had been referred back to community paediatrics in order to better understand their problems.
Sex, ethnicity, age care started and age placed with adopted family were obtained from social care information; medical information was acquired from the community health records and the pre-panel adoption report. Information on families was incomplete (e.g. there was sparse or no information on the 15/38 birth fathers).
Risk factors for future difficulties: themes from our review
The evaluation revealed multiple risk factors for future developmental difficulties in adopted children. These are summarised below.
Adverse childhood events
It is increasingly understood that childhood adversity contributes to poor health, and poor emotional and developmental outcomes in childhood and beyond (Kerker, et al., 2015). We were only able to assess exposure to three out of the 10 generally agreed types of adverse childhood events: parental mental health difficulties, drug and alcohol use, and parental incarceration. Even with this constraint, all children in our evaluation had an average of two of those three characteristics.
While we did not have the data within this review for other types of adverse childhood events in these children, within the borough of Southwark there is a high incidence of domestic violence (estimated in one-third of families) and a high rate of relationship breakdown and children who are placed in care following abuse and/or neglect.
Genetic predisposition to developmental difficulties
In this review, 39% of children’s mothers and 23% of fathers (where information was available) had learning disabilities, as evidenced by an IQ report identified by education. Information on siblings was also limited but 16% of children were known to have a sister or brother with a developmental difficulty.
The lack of information in this evaluation suggests that the effect of genetic predisposition is underestimated. For example, there is growing evidence of an extremely high level of (often undiagnosed) neurodevelopmental difficulties such as ADHD, language disorder and learning difficulties in the prison population (Coles, et al., 2017; Loucks, 2007; Young, et al., 2018). Given that many children in our study had a parent who had been in the justice system, this suggests a higher risk than was measurable from our data.
Intrauterine exposure to drugs and alcohol
Our evaluation demonstrated that 50% of children had maternal illicit drug use within pregnancy and 32% significant maternal alcohol misuse.
Foetal alcohol syndrome/spectrum disorder has a wide range of developmental presentations; maternal drug use appears to contribute to later behavioural and neurodevelopmental issues, therefore is arguably best appreciated by a specialist practitioner (Ross, et al., 2015).
High incidence of neonatal difficulty and impact on development
Fifty percent of children in our review had neonatal difficulties; 24% were premature (of which 56% were born <32 weeks gestation and 44% 32‒36 weeks gestation); and 26% had a ‘complex’ neonatal course even though they were born at term (reasons included sepsis, meningitis, neonatal abstinence syndrome and emergency surgery).
Children with extreme prematurity have a high risk of complex developmental difficulties (Moore, et al., 2012); this is also true of children born at term who have experienced significant medical problems (Kerstjens, et al., 2011). However, those with mild prematurity also have an increased risk of specific behavioural and emotional difficulties.
High incidence of developmental need at panel review
In our evaluation, 21% of children were noted to have developmental delay (some with isolated speech delay, some with motor/language delay) at 18‒24 months, at their final medical review before matching and placement.
Referrals back to community paediatrics
Eighteen percent of children from this sample (n = 7) have, thus far, been re-referred to our community paediatrics service. This is a high proportion of children, yet we suspect that it massively under-appreciates the real need, given that many children would have moved out of area, changed names and NHS numbers were not accounted for; also concerns about needs in some children may not have resulted in formal referral.
High incidence of re-referral in children not previously noted as having developmental delay or behavioural needs
Only one of the seven children had been identified as having developmental or behavioural needs at adoption panel. We do not have information about the other six children who had developmental delay at matching as they all moved out of the area.
Children who are re-referred present with multiple needs
Children who were re-referred to community paediatrics had, on average, at least three discrete difficulties (e.g. social communication, bladder and bowel and sensory needs).
The outcomes of all but one of the re-referred children were available. They demonstrated an average of at least three diagnoses, the details of which can be seen in Figure 1.
Diagnoses.
Conclusion
Our evaluation has demonstrated the unique role that community paediatricians can have in the post-adoptive review of children and their adoptive families. In particular, they offer expertise regarding environmental and neurodevelopmental risk factors and diagnosis and management of health and developmental difficulties. As such, they are well placed to offer diagnosis, practical advice and emotional support for adoptive parents and families. It is important to acknowledge that developmental needs may not be present at the time of adoption but evolve over time.
The specific needs of children post-adoption are under-represented in the literature and poorly understood by many services. Research is called for to understand this further. There needs to be increasing awareness in planning appropriate services, and a low threshold for referral to community paediatricians as part of the wider service needs for children with difficulties after adoption.
Footnotes
These notes were prepared by