Caroline Richards
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View article: ‘Picking the best of a bad bunch’: Exploring stakeholder perspectives of self-harm assessment tools for autistic adults
‘Picking the best of a bad bunch’: Exploring stakeholder perspectives of self-harm assessment tools for autistic adults Open
Autistic people are at greater risk of self-harm than non-autistic people, yet no tools exist specifically for assessing self-harm in this population. We therefore conducted two focus groups with autistic adults (n = 5) and professionals (…
View article: A longitudinal study of psychological distress during and after COVID‐19 restrictions in caregivers of children with intellectual disability in the UK
A longitudinal study of psychological distress during and after COVID‐19 restrictions in caregivers of children with intellectual disability in the UK Open
Introduction The current study explored longitudinally whether child behaviours that challenge and caregiver coping strategies was associated with psychological distress in caregivers of children with and without intellectual disability du…
View article: The impact of paediatric epilepsy and co-occurring neurodevelopmental disorders on functional brain networks in wake and sleep
The impact of paediatric epilepsy and co-occurring neurodevelopmental disorders on functional brain networks in wake and sleep Open
Epilepsy is one of the most common neurological disorders in children. Diagnosing epilepsy in children can be very challenging, especially as it often coexists with neurodevelopmental conditions like autism and ADHD. Functional brain netwo…
View article: Qualitative interview with mothers of moderately or late preterm infants in the UK: where are the care gaps?
Qualitative interview with mothers of moderately or late preterm infants in the UK: where are the care gaps? Open
Introduction Preterm birth (<37 gestational weeks) accounts for an increasing proportion of global births each year, with moderately or late preterm birth (MLPT) (32 +0/7 –36 +6/7 gestational weeks) comprising over 80% of all preterm birth…
View article: Are you coping how I'm coping? An exploratory factor analysis of the Brief-COPE among caregivers of children with and without learning disabilities during COVID-19 restrictions in the UK
Are you coping how I'm coping? An exploratory factor analysis of the Brief-COPE among caregivers of children with and without learning disabilities during COVID-19 restrictions in the UK Open
Objectives
\nThe current study aimed to answer the following questions: (1) What factor structures emerge to responses to the brief coping orientation to problems experienced inventory in a post-pandemic population of caregivers of childre…
View article: Measurement properties of tools used to assess self-harm in autistic and general population adults
Measurement properties of tools used to assess self-harm in autistic and general population adults Open
Autistic people are at increased risk of experiencing self-harm compared to the general population. However, it is unclear which tools are being used to assess self-harm in autistic people, or whether existing tools need to be adapted for …
View article: Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England
Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England Open
Background One 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 …
View article: Exploring objective measures of overactivity in children with rare genetic syndromes
Exploring objective measures of overactivity in children with rare genetic syndromes Open
Background Overactivity is prevalent in several neurodevelopmental conditions, including Smith-Magenis syndrome, Angelman syndrome, and tuberous sclerosis complex, although has been predominantly measured using questionnaire techniques. Th…
View article: Behaviours that Challenge in SATB2-associated Syndrome: Correlates of Self-injury, Aggression and Property Destruction
Behaviours that Challenge in SATB2-associated Syndrome: Correlates of Self-injury, Aggression and Property Destruction Open
SATB2-associated syndrome (SAS) is a genetic syndrome characterised by intellectual disability, severe speech delay, and palatal and dental problems. Behaviours that challenge (BtC) are reported frequently; however, there is limited resear…
View article: Non-pharmacological and pharmacological interventions for the reduction or prevention of topographies of behaviours that challenge in people with intellectual disabilities: a systematic review and meta-analysis of randomised controlled trials
Non-pharmacological and pharmacological interventions for the reduction or prevention of topographies of behaviours that challenge in people with intellectual disabilities: a systematic review and meta-analysis of randomised controlled trials Open
Cerebra.
View article: The contribution of sleep and co-occurring neurodevelopmental conditions to quality of life in children with epilepsy
The contribution of sleep and co-occurring neurodevelopmental conditions to quality of life in children with epilepsy Open
These data from our study shed light on the complicated relationship between sleep, neurodevelopmental characteristics and epilepsy. Findings suggest that the impact of sleep on HRQOL in CWE is possibly mediated by neurodevelopmental chara…
View article: Concordance of objective and subjective measures of sleep in children with neurodevelopmental conditions: A systematic review and meta-analysis
Concordance of objective and subjective measures of sleep in children with neurodevelopmental conditions: A systematic review and meta-analysis Open
The purpose of this systematic review and meta-analysis is to delineate the concordance of objective and subjective measures of sleep in children with neurodevelopmental conditions (NDCs). A systematic literature search identified 31 studi…
View article: Experiences of parents of children with rare neurogenetic conditions during the COVID-19 pandemic: an interpretative phenomenological analysis
Experiences of parents of children with rare neurogenetic conditions during the COVID-19 pandemic: an interpretative phenomenological analysis Open
Background The Coronavirus disease 2019 (COVID-19) pandemic has impacted parental and child mental health and wellbeing in the UK. This study aimed to explore the experiences of parents of children with rare neurological and neurodevelopme…
View article: A systematic review and meta-analysis of suicidality in autistic and possibly autistic people without co-occurring intellectual disability
A systematic review and meta-analysis of suicidality in autistic and possibly autistic people without co-occurring intellectual disability Open
Background Suicidality is highly prevalent in autistic people without co-occurring intellectual disabilities, and high autistic traits are found in adults who have attempted suicide. However, prevalence rates for both autistic and possibly…
View article: The impact of paediatric epilepsy and co-occurring neurodevelopmental disorders on functional brain networks in wake and sleep
The impact of paediatric epilepsy and co-occurring neurodevelopmental disorders on functional brain networks in wake and sleep Open
Epilepsy is one of the most common neurological disorders in children. Diagnosing epilepsy in children can be very challenging, especially as it often coexists with neurodevelopmental conditions like autism and ADHD. Functional brain netwo…
View article: The 10‐year trajectory of aggressive behaviours in autistic individuals
The 10‐year trajectory of aggressive behaviours in autistic individuals Open
Background Aggressive behaviours are common in people with neurodevelopmental conditions, contributing to poorer quality of life and placement breakdown. However, there is limited empirical research documenting the prevalence and persisten…
View article: The developmental trajectory of sleep in children with Smith-Magenis syndrome compared to typically developing peers: a 3-year follow-up study
The developmental trajectory of sleep in children with Smith-Magenis syndrome compared to typically developing peers: a 3-year follow-up study Open
Study Objectives To determine the trajectory of: (i) objective sleep parameters and (ii) caregiver-reported sleep questionnaire scores over 3 years in children with Smith-Magenis syndrome (SMS) compared to age-matched typically developing …
View article: Experiences of parents of children with rare neurogenetic conditions during the COVID-19 pandemic: an interpretative phenomenological analysis.
Experiences of parents of children with rare neurogenetic conditions during the COVID-19 pandemic: an interpretative phenomenological analysis. Open
BackgroundThe Coronavirus disease 2019 (COVID-19) pandemic has impacted parental and child mental health and wellbeing in the UK. This study aimed to explore the experiences of parents of children with rare neurological and neurodevelopmen…
View article: Phenotypic characteristics and variability in CHARGE syndrome: a PRISMA compliant systematic review and meta-analysis
Phenotypic characteristics and variability in CHARGE syndrome: a PRISMA compliant systematic review and meta-analysis Open
Background CHARGE syndrome (OMIM #214800) is a phenotypically complex genetic condition characterised by multi-system, multi-sensory impairments. Behavioural, psychological, cognitive and sleep difficulties are not well delineated and are …
View article: Direct assessment of overnight parent-child proximity in children with behavioral insomnia: Extending models of operant and classical conditioning
Direct assessment of overnight parent-child proximity in children with behavioral insomnia: Extending models of operant and classical conditioning Open
The novel application of radio frequency identification technology is a feasible method for studying overnight parent-child proximity. Profiles of proximity between participants that are not closely aligned with operant models of behaviora…
View article: Rare neurogenetic conditions and mental health of families during COVID-19
Rare neurogenetic conditions and mental health of families during COVID-19 Open
Background: The impact of the COVID-19 pandemic on the wellbeing of parents and children in the general population has been well-documented. This study investigated wellbeing in parents of and children with rare neurogenetic conditions, wh…