Impact of and research priorities in early onset epilepsy: An investigation of parental concerns.

[Background and aim] Early onset epilepsy is a neurological condition with significant developmental consequences, and presents affected children and families with challenges which pervade many aspects of family life. Whilst the concerns of parents and the impact on quality of life is well documented in qualitative research, little emphasis has been placed on the context of 'early onset', and the implications of these concerns for research priority setting. We aimed to explore parental perspectives regarding concerns and the impact of early onset epilepsy on the child and family, and to identify priorities for future paediatric epilepsy research. [Methods] The Brain development in Early Epilepsy: Parent Priorities (BEE-PP) project employed a mixed methods approach to collect information on parents' experience of having a child diagnosed with early onset epilepsy before 36 months old and aged up to 16 years old. Parents completed an online survey (n = 15) followed by a focus group (n = 5) to explore their main concerns regarding early onset epilepsy, the impact on family life and research priorities. [Results] A thematic analysis of the focus group data generated eight themes related to concerns of parents, the impact on the family and research priorities. The three main concerns identified were the expected trajectory of their child's development, a lack of seizure control following diagnosis and adverse behavioural side effects of medication. Within family life, early onset epilepsy had an impact on sibling autonomy and psychosocial adaptation, poorer parental wellbeing and restricted social and personal activities. The need for clearer information regarding their child's developmental trajectory, and managing the side effects of medication and their interactions with behaviour over time were topics of priority for future epilepsy research. [Interpretation] The impact of early onset epilepsy on the family is pervasive and requires the provision of appropriate healthcare service-led support for families to improve quality of life and children's adjustment to epilepsy. Regular monitoring of the concerns of parents and the impact of the diagnosis would be beneficial for addressing epilepsy-related and psychosocial needs of the wider family throughout their child's development. Implications for future research priority setting with regards to improved clinician-to-parent information sharing and managing the behavioural side effects of medication are discussed.

Negative parental emotional environment increases the association between childhood behavioral problems and impaired recognition of negative facial expressions.

Impaired facial emotion recognition is a transdiagnostic risk factor for a range of psychiatric disorders. Childhood behavioral difficulties and parental emotional environment have been independently associated with impaired emotion recognition; however, no study has examined the contribution of these factors in conjunction. We measured recognition of negative (sad, fear, anger), neutral, and happy facial expressions in 135 children aged 5-7 years referred by their teachers for behavioral problems. Parental emotional environment was assessed for parental expressed emotion (EE) - characterized by negative comments, reduced positive comments, low warmth, and negativity towards their child - using the 5-minute speech sample. Child behavioral problems were measured using the teacher-informant Strengths and Difficulties Questionnaire (SDQ). Child behavioral problems and parental EE were independently associated with impaired recognition of negative facial expressions specifically. An interactive effect revealed that the combination of both factors was associated with the greatest risk for impaired recognition of negative faces, and in particular sad facial expressions. No relationships emerged for the identification of happy facial expressions. This study furthers our understanding of multidimensional processes associated with the development of facial emotion recognition and supports the importance of early interventions that target this domain.

Understanding de novo onset of anxiety during COVID-19: Pre-pandemic socio-emotional functioning in vulnerable children.

Background: There is a need to understand and mitigate the psychological impacts of the COVID-19 pandemic for children known to be vulnerable. Data from prior to the pandemic are required to provide robust assessments of the socio-emotional impacts of COVID-19 and identify those who are more vulnerable. Method: This study capitalises on an ongoing UK study of primary school children (4-8 years) identified prior to the pandemic as "at risk" for mental health problems by teachers. We collected mental health and social-emotional functioning data prior to the pandemic (Time 1) and re-assessed this cohort (N = 143) via researcher-led videocalls during lockdown (Time 2, summer 2020) and post-lockdown, 12 months later (Time 3; summer 2021). Results: Mental health problems, particularly clinically significant anxiety, increased from 34% to 43% during lockdown and to 48% post-lockdown. Parental mental health difficulties (anxiety and depression) were prevalent during lockdown (40%) but had decreased 1 year later (20%). Children who developed clinically significant anxiety during the pandemic had impaired socio-emotional functioning at Time 1 (i.e., impaired emotion recognition, low self-esteem and social problems) and a high proportion (44%) had no contact with any peers during lockdown, which may have contributed to their anxiety, especially their school anxiety. Conclusion: The pandemic appears to have exacerbated anxiety in already vulnerable children. A profile of socio-emotional problems identified a group of children who developed significant anxieties during the pandemic. These socio-emotional processes can be targeted for intervention to mitigate the negative mental health consequences of the pandemic and contribute to resilience in children.

Understanding why the COVID-19 pandemic-related lockdown increases mental health difficulties in vulnerable young children.

BACKGROUND: The mental health consequences of school closure, social isolation, increased financial and emotional stress, and greater exposure to family conflicts are likely to be pronounced for primary school children who are known to be vulnerable. Data from prior to the pandemic are needed to provide robust assessments of the impact of COVID-19 on vulnerable children. METHOD: The present study capitalises on an ongoing study of primary school children (4-8 years) identified as 'at-risk' for mental health problems by teachers. We collected mental health and socio-economic data prior to the pandemic and re-assessed this cohort (n = 142) via researcher-led video calls during the pandemic to evaluate the social and emotional impacts of COVID-19 for these families. RESULTS: Mental health problems, particularly anxiety, increased significantly in these children. Parental mental health difficulties (anxiety and depression) were also prevalent. There were higher reports of financial stress during lockdown amongst low-income families previously identified as living in poverty, prior to the COVID-19 pandemic. Financial strain was found to indirectly predict increases in child mental health problems through parental mental health. CONCLUSION: These findings show that the pandemic exacerbated mental health problems in already vulnerable children. These negative outcomes were explained by financial stress (e.g., lost employment, loss of income and inability to pay bills), which was negatively linked to parental mental health.

Theory of mind, emotional and social functioning, and motor severity in children and adolescents with dystonic cerebral palsy.

AIMS: This cross-sectional study aimed to investigate whether children and adolescents with dystonic cerebral palsy (CP) present with emotional and social difficulties along side motor limitations. PARTICIPANTS/MEASURES: Twenty-two verbal and nonverbal children and adolescents with dystonic CP were compared with a normative sample of twenty children and adolescents on measures of theory of mind (ToM), emotion regulation (ER), and social difficulties (SD). RESULTS: Higher social and emotional difficulties were found in the dystonic CP group compared to the control group. Nonverbal participants with dystonic CP were found to present with greater social impairment and lower ToM ability than their verbal counterparts. Emotional regulation and hyperactivity and attentional difficulties (HAD) significantly predicted ToM ability and social difficulties. Lower Gross Motor Function Classification System (GMFCS) level and IQ also contributed to differences in ToM ability. INTERPRETATION: Findings support the need for greater attention to the emotional health and social development of children/adolescents with dystonic CP, along with assessments of motor difficulties in the planning and implementation of interventions and individual care plans. Further research is needed to explore links between motor disorder and mental state understanding in this clinical group.

Stable cognitive functioning with improved perceptual reasoning in children with dyskinetic cerebral palsy and other secondary dystonias after deep brain stimulation.

BACKGROUND: Dystonia is characterised by involuntary movements (twisting, writhing and jerking) and postures. Secondary dystonias are described as a heterogeneous group of disorders with both exogenous and endogenous causes. There is a growing body of literature on the effects of deep brain stimulation (DBS) surgery on the motor function in childhood secondary dystonias, however research on cognitive function after DBS is scarce. METHODS: Cognitive function was measured in a cohort of 40 children with secondary dystonia following DBS surgery using a retrospective repeated measures design. Baseline pre-DBS neuropsychological measures were compared to scores obtained at least one year following DBS. Cognitive function was assessed using standardised measures of intellectual ability and memory. RESULTS: There was no significant change in the assessed domains of cognitive function following DBS surgery. A significant improvement across the group was found on the Picture Completion subtest, measuring perceptual reasoning ability, following DBS. CONCLUSION: Cognition remained stable in children with secondary dystonia following DBS surgery, with some improvements noted in a domain of perceptual reasoning. Further research with a larger sample is necessary to further explore this, in particular to further subdivide this group to account for its heterogeneity. This preliminary data has potentially positive implications for the impact of DBS on cognitive functioning within the childhood secondary dystonia population.