Specialist Child Services Research Articles

Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England

BackgroundOne in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised (“service models”) in England for community-based health and care services for children with intellectual disability who display behaviours that challenge.MethodsSurvey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., “service models”).ResultsThe latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models.Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services).ConclusionsOur analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care.Study registrationTrial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022.

Piloting the Circle of Security Parenting group with parents of children with a learning disability: An exploratory case study

AbstractBackgroundThe Circle of Security Parenting programme is a manualised parenting intervention that aims to enhance secure attachment and improve relationships between children and their caregivers. It is gaining global popularity and acquiring emerging support. Researchers are increasingly interested in its effectiveness in enhancing parent–child attachment, improving parent psychological flexibility and reducing parental stress. However, research to date has predominantly focused on parents of typically developing children, despite the Circle of Security Parenting intervention being used as a parenting programme in specialist services for children with learning disabilities. There is, however, no clear evidence that this programme meets the diverse needs of parents who encounter additional challenges that may impact on the development of secure parent–child attachment relationships. This case study aims to pilot a seven‐session Circle of Security Parenting programme for parents of children with learning disabilities.MethodsFour participants completed pre‐ and post‐intervention outcome measures specified by Circle of Security Parenting, including: the Parental Stress Scale, Parental Acceptance Questionnaire, Acceptance and Action Questionnaire II and the Caregiver Helplessness Questionnaire.FindingsQuantitative results are mixed, and did not demonstrate the improvements in parental stress or psychological flexibility that might be expected. Qualitative accounts of participants' experiences offer potential explanations for the findings that may be unique to parents of children with learning disabilities.ConclusionThis paper recognises that further research is needed to identify evidence‐based programmes that meet the needs of this population.

Safeguarding Children and Young People During the COVID‐19 Pandemic

Safeguarding Children and Young People During the COVID‐19 Pandemic

Children and young people who die by suicide: childhood-related antecedents, gender differences and service contact.

Worldwide suicide is commonest in young people and in many countries, including the UK, suicide rates in young people are rising. To investigate the stresses young people face before they take their lives, their contact with services that could be preventative and whether these differ in girls and boys. We identified a 3-year UK national consecutive case series of deaths by suicide in people aged 10-19, based on national mortality data. We extracted information on the antecedents of suicide from official investigations, primarily inquests. Between 2014 and 2016, there were 595 suicides by young people, almost 200 per year; 71% were male (n = 425). Suicide rates increased from the mid-teens, most deaths occurred in those aged 17-19 (443, 74%). We obtained data about the antecedents of suicide for 544 (91%). A number of previous and recent stresses were reported including witnessing domestic violence, bullying, self-harm, bereavement (including by suicide) and academic pressures. These experiences were generally more common in girls than boys, whereas drug misuse (odds ratio (OR) = 0.54, 95% CI 0.35-0.83, P = 0.006) and workplace problems (OR 0.52, 95% CI 0.28-0.96, P = 0.04) were less common in girls. A total of 329 (60%) had been in contact with specialist children's services, and this was more common in girls (OR 1.86, 95% CI 1.19-2.94, P = 0.007). There are several antecedents to suicide in young people, particularly girls, which are important in a multiagency approach to prevention incorporating education, social care, health services and the third sector. Some of these may also have contributed to the recent rise.

An evaluation of paediatric tinnitus services in UK National Health Service audiology departments

BackgroundWhilst evidence indicates many children experience troublesome tinnitus, specialist services for children are far less established than those available for adults. To date, there is limited understanding of how paediatric tinnitus is managed in the UK, and to what extent current practice reflects what is recommended. This service evaluation aimed to 1) profile how tinnitus in children is managed in UK clinical practice, and assess to what extent care provided by services reflects advice included in the British Society of Audiology (BSA) Tinnitus in Children Practice Guidance, 2) collate clinician opinions on how services may be optimised, and 3) identify common problems experienced by children who present with bothersome tinnitus in clinic.MethodsAs part of a larger survey, eight questions regarding services for paediatric tinnitus were distributed to UK NHS audiology services via email and social media. Representatives from eighty-seven services responded between July and September 2017.ResultsFifty-three percent of respondents reported that their department provided a paediatric tinnitus service. Among these services, there was widespread use of most BSA recommended assessments and treatments. Less widely used practices were the assessment of mental health (42%), and the use of psychological treatment approaches; cognitive behavioural therapy (CBT) (28%), mindfulness (28%), and narrative therapy (14%). There was varied use of measurement tools to assess tinnitus in children, and a minority of respondents reported using adult tinnitus questionnaires with children. Frequently reported tinnitus-related problems presented by children were sleep difficulties, concentration difficulties at school, situation-specific concentration difficulties, and emotional distress.ConclusionsApproaches used to manage children with troublesome tinnitus in UK NHS services are largely consistent and reflective of the current practice guidance. However, findings from this study indicate specialist staff training, access to child-specific tools, and the treatment and referral of children with tinnitus-related psychological problems represent key areas in need of optimisation.

The Incredible Years Autism Spectrum and Language Delays Parent Program: A Pragmatic, Feasibility Randomized Controlled Trial.

Behavior problems in children with autism spectrum disorders (ASD) are common and particularly stressful for parents. This study aimed to examine the feasibility of delivering a parenting program in existing services, and the feasibility of conducting a future large-scale Randomized Controlled Trial evaluation of the effectiveness of the intervention. Parents of children aged 3-8 years with a diagnosis of ASD, or strongly suspected ASD were eligible to participate. A multicenter, pragmatic, feasibility randomized controlled trial was conducted in four specialist children's services in Wales. Families were randomly assigned to receive the Incredible Years® Autism Spectrum and Language Delays (IY-ASLD) parent program immediately or to a wait-list, treatment as usual control condition. IY-ASLD sessions were delivered once a week for 12 weeks. The primary outcomes related to feasibility (recruitment, retention, fidelity, and acceptability). Preliminary outcome analyses were conducted using covariance models controlling for study site and baseline scores. From October 5 to December 19, 2016, 58 families were randomized, 29 to IY-ASLD and 29 to control. Three parents did not attend any sessions while 19 (73%) completed the program. Fidelity of delivery was high (88%), as was satisfaction with the program. Fifty-three (91%) completed the follow-up measures. All 95% CIs for effect sizes included zero in exploratory outcome analyses. This study supports the feasibility of delivering the IY-ASLD in existing services with good levels of acceptability and fidelity evident. A larger randomized controlled trial is required to examine the effectiveness of the program. Autism Res 2020, 13: 1011-1022. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined the feasibility and acceptability of delivering a parenting program for parents of children aged 3-8 years with Autism Spectrum Disorder in existing child services. Recruitment and retention in the study were good and parents rated all aspects of the program positively. Practitioners were able to deliver the program as intended and the measures used for program outcomes were appropriate. A larger study to examine program effectiveness would be feasible.

Children and Young People Who Die by Suicide: Childhood-Related Antecedents, Gender Differences and Service Contact

Background: Suicide rates in young people are rising. We sought to understand the stresses young people face before they take their lives, their contact with services that could be preventive and whether these factors differ in girls and boys. Methods: We identified a three-year UK national consecutive case series of deaths by suicide in people aged 10-19, based on national mortality data. We extracted information on factors preceding suicide from official investigations, primarily inquests. Outcomes: There were 595 suicides by young people during the study period, almost 200 per year; most were male (425, 71%). Suicide rates increased significantly from the mid-teens. We obtained data on factors preceding suicide for 544 (91%). A number of previous and recent stresses were reported including witnessing domestic violence, bullying, self-harm, bereavement (including by suicide), and academic pressures. These factors were generally more common in girls while drug misuse and workplace problems were more common in boys. 42 (8%) were looked after children. 28 (5%) young people had identified as LGBT. We found suicide-related internet use in 128 (24%), most often searching for information on suicide method. 329 (60%) had been in contact with specialist children's services at some time, and this was more common in girls. Interpretation: Several stressors precede suicide by young people, particularly girls, and are important in a multi-agency approach to prevention in education, social care, health services, and the third sector. Some of these factors may also have contributed to the recent rise. Funding Statement: The Healthcare Quality Improvement Partnership Declaration of Interests: LA chairs the National Suicide Prevention Strategy Advisory Group at the Department of Health and Social Care in England; NK is a member of the Group. NK chaired the guideline development group for the 2012 National Institute for Health and Clinical Excellence (NICE) guidelines on the longer term management of self-harm and currently chairs the guideline development group for the NICE depression in adults’ guidelines. All other authors declare no competing interests. Ethical Approval Statement: The study received approval from the National Research Ethics Service (NRES) Committee North West (Greater Manchester South, UK). Exemption under Section 251 of the NHS Act 2006, enabling access to confidential and identifiable information without informed consent in the interest of improving care, was obtained from the Health Research Authority Confidentiality Advisory Group (HRA-CAG) and the Public Benefit and Privacy Panel for Health and Social Care (PBPP).

Early Initiatives for Children at Risk—Development of a Program for the Prevention and Treatment of Behavior Problems in Primary Services

During the past decade, Norwegian authorities have initiated and funded a project to scale up the use of evidence-based programs for the prevention and treatment of conduct problems in children. The first step in this process was to increase treatment competence by implementing the Parent Management Training-Oregon Model (PMTO) in specialist services for children. The second step was to develop the program Early Initiatives for Children at Risk (Norwegian acronym, TIBIR), designed to identify children with possible conduct problems as early as possible and to offer tailored interventions as part of the ordinary primary services for children in individual municipalities. The theoretical rationale and practical considerations leading to the design of TIBIR are presented, together with the program modules and current research activities. Some of the challenges concerning the program's ability to reach various risk groups are discussed, as are the challenges encountered regarding quality assurance and fidelity maintenance. Finally, some future research questions are presented and discussed.

From headache tablets to headache tablets – a history of headache in childhood

It is difficult to dispute that headache is a perennial human condition. However, childhood headache having been called the ‘Cinderella’ of paediatric neurology has previously been totally eclipsed by that...

Independent prescribing within a paediatric electrophysiology service

Catherine Renwick explains how non-medical prescribing has enhanced her role within a specialist service for children with arrhythmias

Health care workers' knowledge of current child protection legislation and child discipline practices

AbstractThe reasonable chastisement of children remains legal despite intensive lobbying by various groups to rule out smacking and despite the physical abuse of children being problematic. All professionals working with children have a duty to safeguard and promote children's welfare. This includes knowledge about child protection legislation and child discipline practices. This study assessed the knowledge of 55 health care professionals working in children's services in one NHS trust in relation to child protection legislation and child discipline practices. The study aimed to establish if workers from more specialist child services (e.g. tiers three and four) demonstrated greater knowledge in these two areas than workers from less specialist services (e.g. tiers one and two) and if experience was positively correlated with knowledge. The results suggest that workers in more specialist children's services demonstrated greater knowledge about child protection legislation. There was no difference found between the two groups of health workers in relation to knowledge about child discipline practices. The number of years' experience was not significantly related to knowledge in either area considered. The results are discussed. Inconsistencies and gaps shown in knowledge across both groups of participants are outlined and the clinical implications are highlighted. Copyright © 2010 John Wiley & Sons, Ltd.

Improving outcomes: update on progress

In 2005 the National Institute for Health and Clinical Excellence (NICE) published guidance on improving outcomes in children and young people with cancer. The guidance applies to England and Wales only, but has influenced service development in the four countries of the United Kingdom (UK) and the Republic of Ireland. Progress in implementation of the guidance has been slower than anticipated, mainly because of its complexity and scope, particularly in relation to shared care and services for teenagers and young adults. Supplementary guidance has been developed so that commissioners and providers can work towards meeting the required quality standards. The lessons learned in improving cancer services could inform developments in other specialist services for children and young people.

Beyond Parent Training: Predictors of Clinical Status and Service Use Two to Three Years After Scallywags

The aim of this study is to investigate the predictors of clinical status and service use of a representative sample of children who participated in an innovative multicomponent intervention called Scallywags, a secondary prevention programme for young children at risk of developing conduct disorder. A representative sample of 81 families agreed to contribute to a longitudinal follow-up study two to three years after participation in the intervention. Results showed that participation in the programme was associated with a ;non-clinical' outcome for nearly 50% of children. Predictors of ;clinical' status included family demographics (carer relationship status and family income), child variables (initial problem behaviour level and parent-reported neurodevelopmental disorder) and family factors (parenting stess). Children who participated successfully in the intervention were subsequently significantly less likely to require further specialist children's services. Implications for integrated children's services and future research are explored.

Telemedicine for rural and remote child and youth mental health services

The E-Child and Youth Mental Health Service was designed to provide children and adolescents in Queensland with access to specialist mental health consultations using telemedicine. A project officer provided a single point of contact for referral management and clinic coordination, thereby reducing barriers of access to the service. Over a six-month period from November 2004, 42 point-to-point videoconferences were conducted to nine sites in Queensland. Three multipoint conferences were also conducted. Eleven videoconferences (24%) were arranged for administrative purposes, and 34 (76%) were conducted for the delivery of clinical services (30 patients). The referral and consultation activity suggests an improvement in the capacity of rural and remote mental health service providers to deliver specialist services for children and adolescents.

Prevalence of obsessive-compulsive disorder in the British nationwide survey of child mental health

Obsessive-compulsive disorder (OCD) is a disorder that appears to be under-diagnosed and under-treated, despite the evidence for effective treatments. There are variable estimates of OCD prevalence in the under-16s and published rates give little indication of age trends. The aim of this study was to establish the prevalence and associates of OCD in young people aged 5-15 years. The method was a nationwide (UK) epidemiological study of rates of psychiatric disorder in 5-15 year olds (1999 British Child Mental Health Survey): 10,438 children were assessed. Twenty-five children with OCD were identified (weighted overall prevalence 0.25%; 95% CI 0.14-0.35), with prevalence rising exponentially with increasing age. Compared with normal controls, children with OCD were more likely to be from lower socio-economic class and of lower intelligence. Only three of these children had been seen by specialist children's services. Although OCD is rare in young children, the rate increases towards the adult rates at puberty. Children with OCD have additional psychosocial disadvantage. The majority of the childhood cases identified in this survey appear to have been undetected and untreated.

Pioneers, paediatricians and public health: the evolution of community child health services, Clifton, Nottingham 1983–1999

Since 1976 developments in the training and services provided by general practitioners and community paediatricians have led to a series of changes in clinical services provided for children in the community. A series of studies carried out in the Clifton area of Nottingham from 1983 to 1999 illustrate this. A changing pattern of service delivery is reported in which clinical medical officers provided a largely primary care service in 1983 developing into a paediatric secondary care service in the next decade with the primary health care team having taken over the role of child health surveillance. The community services in the 1990s were taking over the investigation and management of paediatric problems previously seen in the hospital outpatient clinic. The studies illustrate the advantages of locally based services in terms of ease of parental access and consultation between the primary health care team and specialist children's services. Public Health (2001) 115, 412–417.

PSYCHOLOGY SELECTION Clinical Child Psychology and Psychiatry (2000) K. Wigley, A. Mason, S. Lambert, J. Collins, B. Lask & D. Christie. A specialist service for children and adolescents with Tourette's Syndrome. Vol. 5, No, 2, pp. 247–257.

PSYCHOLOGY SELECTION Clinical Child Psychology and Psychiatry (2000) K. Wigley, A. Mason, S. Lambert, J. Collins, B. Lask & D. Christie. A specialist service for children and adolescents with Tourette's Syndrome. Vol. 5, No, 2, pp. 247–257.

A Specialist Service for Children and Adolescents with Tourette’s Syndrome: Problems and Attempted Solutions

We describe various components of a specialist service for children and adolescents with Tourette’s syndrome, and their parents. The clinical demand was such that the structure of the service has had to be changed several times. Support groups, one for the parents, one for the adolescents and one for the children have proved very helpful. A drop-in format, initially considered to be a useful way of coping with demand, has not worked well. These developments and changes are described and discussed, and future developments considered.