"Kind of empowered": Perceptions of socio-emotional development in children driving ride-on cars.

PURPOSE/OBJECTIVE: Early powered mobility (PM) experiences can be essential facilitators of self-initiated mobility, socialization, and exploration for young children with disabilities. Cerebral palsy (CP) and developmental delay are two of the most common diagnoses associated with motor disability in young children with 1 in 345 children diagnosed with CP and 1 in 6 with developmental delay in the US. The purpose of this study was to explore the longitudinal experiences and caregiver perceptions of socio-emotional development in particular, in young children with disabilities during modified ride-on car (ROC) use. RESEARCH METHOD/DESIGN: A qualitative, grounded theory approach was used. Semi-structured interviews were conducted with 15 families (children ages 1-4 with CP or developmental delay) at baseline, 6 months (as able due to COVID), and 1 year following ROC introduction. Data were coded independently by three researchers using constant comparison until data saturation occurred and themes emerged. RESULTS: Four themes emerged from the data: "Leveling the Playing Field," "Breaking Down Barriers," "Fun and Work: ROC as Toy and Therapy Device," and "Mobility is a Pathway to Autonomy." Conclusions/Implication: Children and caregivers viewed ROCs as both fun and therapeutic, consistently identifying perceived benefits for children's socio-emotional development. This qualitative study provides a better understanding of the complexities and impact of ROCs on children and their families in the socio-emotional domain and may help facilitate clinical decision-making when introducing PM to young children with disabilities as part of a multimodal approach to early intervention. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Parkinson's disease and Covid-19: Is there an impact of ethnicity and the need for palliative care.

Under the traditional models of care for People with Parkinson's Disease (PD, PwP), many of their needs remain unmet and a substantial burden of motor and non-motor symptoms they experience may not be tackled sufficiently. An introduction of palliative care (PC) interventions early in the course of PD offers profound benefits: it may improve quality of life of patients, their families and caregivers through the prevention and relief of medical symptoms, while, at the same time, emphasizing their emotional needs and spiritual wellbeing, establishing goals of care, and engaging in the advance care planning (ACP). The ongoing Coronavirus Disease 2019 (Covid-19) pandemic poses an unprecedented set of challenges for PwP and has in many ways (both directly and indirectly) magnified their suffering, thus rapidly raising the demand for PC interventions. Covid-19, as well as the repercussions of prolonged mobility restrictions and limited health-care access might exacerbate the severity of PD motor symptoms and interact negatively with a range of non-motor symptoms, with a detrimental effect on quality of life. Greater motor disability, higher amount of levodopa-induced motor fluctuations with an increased daily off-time, fatigue, anxiety, depression, sleep disturbances, pain and worsening of cognitive complaints might dominate the clinical presentation in PwP during the Covid-19 pandemic, alongside raising psychological and spiritual concerns and anticipatory grief. Here, we aim to provide a foundation for pragmatic and clinically orientated PC approach to improve quality of life and relieve suffering of PwP in the context of the current, ongoing Covid-19 pandemic.

[COVID-19 and change to home nursing care: Prospective study on 100 patients followed in CLCC]. / COVID-19 et modification des aides à domicile : étude prospective auprès de 100 patients suivis en CLCC.

BACKGROUND: During the COVID-19 epidemic, the lockdown measures were associated with professional guidelines to care for patients. We noticed that the home nursing care of some patients monitored in supportive care wards were interrupted. The aim of this study is to determine the impact of lockdown on the home nursing care of patients monitored in supportive care wards. MATERIALS AND METHODS: This observational, descriptive, monocentric, and prospective study was conducted in the supportive care wards from the 04.20 to the 05.15.2020 among 100 patients. They were asked about their home nursing care and their frequency before and after lockdown. Our study received a favorable ruling from the ethics committee of the Hôpitaux universitaires de Strasbourg. RESULTS: About two thirds of patients had experienced a change with their home nursing care. A complete interruption was observed for 40% of them and a reduction of frequency for 10% of them. Some populations were more deeply affected: patients with a performance status 3-4, women, patients living alone or patients with motor disability. The interruption of a task usually performed by a professional was observed for 49% of patients, with the task becoming incumbent on the patient or family caregivers. CONCLUSION: Our study shows a strong impact of the lockdown on the home nursing care of our patients in spite of the professional guidelines encouraging continuity of care. Our study underlines the great importance of protecting the access to care of the most vulnerable patients.

Mental Health in Multiple Sclerosis During the COVID-19 Outbreak: A Delicate Balance between Fear of Contagion and Resilience.

The current study aimed at exploring the relationship between objective disability, illness perceptions, resilience, fear of COVID-19, and psychological distress (i.e., anxiety, depression, and stress) in people with multiple sclerosis (pwMS) during the second wave of the COVID-19 outbreak. A group of 122 pwMS recruited in an Italian university hospital took part in this cross-sectional monocentric study. Hierarchical multiple linear regression analyses were performed to assess the strength of the hypothesized associations. Results indicated that, differently from cognitive impairment, motor disability was positively associated with anxiety. However, accounting for subjective illness perception, such association was no longer significant. Moreover, accounting for both protective and risk factors in the models, even illness perception was no longer significant, highlighting the central role of resilience and fear of COVID-19 in explaining the negative emotional outcomes. Implications for clinical interventions and psychoeducational trainings are discussed.

COVID-19 pandemic and mental distress in multiple sclerosis: Implications for clinical management.

BACKGROUND AND PURPOSE: In multiple sclerosis (MS), disease-related factors and dysfunctional coping might favor the development of mental distress induced by COVID-19 containment measures. Aim of this study was exploring the relationship between disability, coping strategies, daily life reorganization and neuropsychiatric symptoms in an Italian MS population during the COVID-19 lockdown, in order to identify potentially modifiable factors that could inform clinical management of mental distress in people with MS. METHODS: We explored the relationship between mental distress, disability and coping strategies in the Italian MS population under lockdown. Structural equation modeling was applied to information collected via web survey to identify modifiable factors that could account for mental distress. RESULTS: A total of 845 participants (497 with MS and 348 controls) were included in the study. The MS group had higher scores than the control group for depression (p = 0.005), but not for anxiety, emotional dyscontrol or sleep disturbances. The structural equation modeling explained 74% of the variance observed in depression score. Within the model, three latent factors were characterized from measured variables: motor disability and cognitive dysfunction contributed to disability (ß = 0.509 and ß = 0.836; p < 0.001); positive attitude and exercise contributed to active attitude (ß = 0.386 and ß = 0.297; p < 0.001); and avoidance, social support and watching television contributed to passive attitude (ß = 0.301, ß = 0.243 and ß = 0.212; p < 0.001). With regard to the relationship between latent factors and their influence on depression, disability contributed to passive attitude (ß = 0.855; p < 0.001), while both passive and active attitude significantly influenced depression (ß = 0.729 and ß = -0.456; p < 0.001). CONCLUSION: As a practical implication of our model, favoring exercise would enhance active attitude and its positive impact on mental well-being while, at the same time, reducing the negative impact of disability on depression, representing a valuable tool in facing COVID-19-related mental distress.

Epilepsy and lockdown: A survey of patients normally attending a Spanish centre.

BACKGROUND: Lockdown due to the SARS-CoV-2 pandemic became a challenge to maintain care for patients with epilepsy; we aimed to find out how the pandemic affected them. METHODS: We sent an online 22-item questionnaire to patients from our outpatient clinic, a reference centre in Spain for drug-resistant epilepsy, inquiring about the effects of lockdown, from March to May 2020. RESULTS: We sent the survey to 627 patients; 312 (58% women) sent a complete response and were included. Of all respondents, 57% took >2 antiseizure medications. One-third of respondents (29%) declared an associated cognitive or motor disability. A minority had confirmed infection with SARS-CoV-2 (1.92%). Seizure frequency remained like usual in 56% of patients, while 31.2% reported an increase. Less than 10% needed emergent assistance. Almost half reported anxiety or depression, and 25% increased behavioural disorders. Mood (F: 5.40; p: 0.002) and sleep disorders (F = 2.67; p: 0.05) were associated with increase in seizure frequency. Patients were able to contact their physicians when needed and were open to a future telematic approach to follow-up visits. CONCLUSIONS: Seizure frequency and severity remained unchanged in most patients during the lockdown. Mood and sleep disorders were common and associated with seizure worsening. Patients were open to telematic care in the future.

Clinical characteristics of COVID-19 infection in polyhandicapped persons in France.

AIM: Little is known about the clinical profile of COVID-19 infection in polyhandicapped persons. This study aimed to describe the characteristics of this infection among individuals with polyhandicap. METHOD: This was a retrospective observational study. Polyhandicap was defined by the combination of motor deficiency, profound mental retardation, and age at onset of cerebral lesion younger than 6 years. A positive COVID-19 status was considered for patients with a positive COVID-19 laboratory test result, or patients presenting with compatible symptoms and living in an institution or at home with other patients or relatives who had laboratory-confirmed COVID-19 infection. Data collection included sociodemographic data, clinical and paraclinical characteristics, as well as the management and treatment for COVID-19 infection. RESULTS: We collected 98 cases, with a sex ratio of 0.98 and a mean age of 38.5 years (3 months to 73 years). COVID-19 infection was paucisymptomatic in 46% of patients, 20.6% of patients presented with dyspnea, while the most frequent extra-respiratory symptoms were digestive (26.5%) and neurological changes (24.5%); 18 patients required hospital admission, four adults died. The mean duration of infection was longer for adults than for children, and the proportion of taste and smell disorders was higher in older patients. CONCLUSION: These findings suggest that PLH persons often develop paucisymptomatic forms of COVID-19 infection, although they may also experience severe outcomes, including death. Clinicians should be aware that COVID-19 symptoms in PLH persons are often extra-respiratory signs, mostly digestive and neurologic, which may help in the earlier identification of COVID-19 infection in this particular population of patients.