"Untold Distress" - How did the COVID-19 pandemic affect those who had previously experienced an epilepsy-related bereavement?

PURPOSE: This study explores the impact of the COVID-19 pandemic and lockdown on people with lived experience of sudden bereavement as a consequence of an epilepsy-related death. METHOD: We developed an online survey with fixed choice and open-ended response formats to collect data on grief symptoms and well-being during the pandemic. A total of 275 people bereaved by epilepsy-related deaths between 1980-2020 participated in this study: with 79 participants providing free-text responses for inductive thematic analysis. RESULTS: In total, 84% of participants reported a bereavement following a sudden death of a person aged under 40, with 22% aged 19 and under. The majority (77% of participants) reported they had been thinking more about the person who died compared to before the COVID-19 outbreak and 54% had experienced more distressing flashbacks to the time of death. Additionally, 61% reported more difficulties falling asleep and staying asleep and 88% of participants reported that the outbreak and response measures had negatively impacted upon their mental health. Medication was being taken for a diagnosed mental health condition by 33% of participants at the time of the study. We categorized these negative experiences during COVID in to four main-themes - 'Family', 'Lifestyle', 'Personal Well-being' and 'Health Services and Shielding Populations'. The 'Personal Well-being' theme was inextricably linked to grief symptoms including 'reflection on the death', 're-exposure to feeling', 'grief', 'salience of sudden deaths in the media' and 'inability to commemorate anniversaries and rituals'. These findings were consistent for bereaved people irrespective of the recency of the death. CONCLUSION: This study highlights the impact of the disruption caused by the pandemic on the grief-management of those bereaved by epilepsy-related death. Grief is not static and its management is connected to the psychosocial and formal support structures that were disrupted during the pandemic. The removal of these supports had an adverse effect upon the mental health and well-being of many bereaved. There is an urgent need for a system-wide transformation of epilepsy and mental health services to be inclusive of the needs and experiences of people impacted by sudden deaths in epilepsy and the contribution of the specialist service developed by families and clinicians to meet this gap.

Reliability and criterion validity of two-dimensional movement assessments in those with patellofemoral pain.

OBJECTIVES: Determine criterion validity and intra/inter-rater reliability of 2-dimensional (2D) knee frontal plane projection angle (kFPPA), hip frontal plane projection angle (hFPPA), and dynamic valgus index (DVI) during forward step-downs in those with patellofemoral pain (PFP). DESIGN: Cross-sectional. SETTING: University research laboratory. PARTICIPANTS: 39 participants with PFP (34.18 ± 7.41years, 170± .1 cm, 81.03 ± 19.36 kg, duration of pain: 68.67 ± 85.08months, anterior knee pain scale: 80.49 ± 7.87, visual analog scale:2.08 ± 2.02) MAIN OUTCOME MEASURES: Average 3D hip and knee sagittal, frontal, and transverse joint angles and 2D kFPPA, hFPPA, and DVI at maximum knee flexion were variables of interest. 3D DVI was calculated as the sum of hip and knee frontal and transverse angles. 2D kFPPA, hFPPA, and DVI were calculated by two raters independently on two occasions. RESULTS: Intra- and inter-rater reliability of all 2D angles were excellent. kFPPA was moderately correlated to 3D knee transverse angles. hFPPA was moderately correlated to 3D hip frontal and transverse angles and largely correlated to 3D DVI. 2D DVI was moderately correlated to hip transverse angles. CONCLUSION: kFPPA, hFPPA, and DVI are reliable. hFPPA may be reflective of 3D hip and knee frontal and transverse motion during forward step-downs in those with PFP.

Impact of the COVID-19 pandemic on people with epilepsy: findings from the US arm of the COV-E study.

OBJECTIVES: As part of the COVID-19 and Epilepsy (COV-E) global study, we aimed to understand the impact of COVID-19 on the medical care and well-being of people with epilepsy (PWE) in the United States, based on their perspectives and those of their caregivers. METHODS: Separate surveys designed for PWE and their caregivers were circulated from April 2020 to July 2021; modifications in March 2021 included a question about COVID-19 vaccination status. RESULTS: We received 788 responses, 71% from PWE (n = 559) and 29% (n=229) from caregivers of persons with epilepsy. A third (n = 308) of respondents reported a change in their health or in the health of the person they care for. Twenty-seven percent (n = 210) reported issues related to worsening mental health. Of respondents taking ASMs (n = 769), 10% (n= 78) reported difficulty taking medications on time, mostly due to stress causing forgetfulness. Less than half of respondents received counseling on mental health and stress. Less than half of the PWE reported having discussions with their healthcare providers about sleep, ASMs and potential side effects, while a larger proportion of caregivers (81%) reported having had discussions with their healthcare providers on the same topics. More PWE and caregivers reported that COVID-19 related measures caused adverse impact on their health in the post-vaccine period than during the pre-vaccine period, citing mental health issues as the primary reason. SIGNIFICANCE: Our findings indicate that the impact of the COVID-19 pandemic in the US on PWE is multifaceted. Apart from the increased risk of poor COVID-19 outcomes, the pandemic has also had negative effects on mental health and self-management. Healthcare providers must be vigilant for increased emotional distress in PWE during the pandemic and consider the importance of effective counseling to diminish risks related to exacerbated treatment gaps.

Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study.

The COVID-19 pandemic has had an unprecedented impact on people and healthcare services. The disruption to chronic illnesses, such as epilepsy, may relate to several factors ranging from direct infection to secondary effects from healthcare reorganization and social distancing measures. OBJECTIVES: As part of the COVID-19 and Epilepsy (COV-E) global study, we ascertained the effects of COVID-19 on people with epilepsy in Brazil, based on their perspectives and those of their caregivers. We also evaluated the impact of COVID-19 on the care delivered to people with epilepsy by healthcare workers. METHODS: We designed separate online surveys for people with epilepsy and their caregivers. A further survey for healthcare workers contained additional assessments of changes to working patterns, productivity, and concerns for those with epilepsy under their care. The Brazilian arm of COV-E initially collected data from May to November 2020 during the country's first wave. We also examined national data to identify the Brazilian states with the highest COVID-19 incidence and related mortality. Lastly, we applied this geographic grouping to our data to explore whether local disease burden played a direct role in difficulties faced by people with epilepsy. RESULTS: Two hundred and forty-one people returned the survey, 20% were individuals with epilepsy (n = 48); 22% were caregivers (n = 53), and 58% were healthcare workers (n = 140). Just under half (43%) of people with epilepsy reported health changes during the pandemic, including worsening seizure control, with specific issues related to stress and impaired mental health. Of respondents prescribed antiseizure medication, 11% reported difficulty taking medication on time due to problems acquiring prescriptions and delayed or canceled medical appointments. Only a small proportion of respondents reported discussing significant epilepsy-related risks in the previous 12 months. Analysis of national COVID-19 data showed a higher disease burden in the states of Sao Paulo and Rio de Janeiro compared to Brazil as a whole. There were, however, no geographic differences observed in survey responses despite variability in the incidence of COVID-19. CONCLUSION: Our findings suggest that Brazilians with epilepsy have been adversely affected by COVID-19 by factors beyond infection or mortality. Mental health issues and the importance of optimal communication are critical during these difficult times. Healthcare services need to find nuanced approaches and learn from shared international experiences to provide optimal care for people with epilepsy as the direct burden of COVID-19 improves in some countries. In contrast, others face resurgent waves of the pandemic.

Evaluating risk to people with epilepsy during the COVID-19 pandemic: Preliminary findings from the COV-E study.

The COVID-19 pandemic has caused global anguish unparalleled in recent times. As cases rise, increased pressure on health services, combined with severe disruption to people's everyday lives, can adversely affect individuals living with chronic illnesses, including people with epilepsy. Stressors related to disruption to healthcare, finances, mental well-being, relationships, schooling, physical activity, and increased isolation could increase seizures and impair epilepsy self-management. We aim to understand the impact that COVID-19 has had on the health and well-being of people with epilepsy focusing on exposure to increased risk of seizures, associated comorbidity, and mortality. We designed two online surveys with one addressing people with epilepsy directly and the second for caregivers to report on behalf of a person with epilepsy. The survey is ongoing and has yielded 463 UK-based responses by the end of September 2020. Forty percent of respondents reported health changes during the pandemic (n = 185). Respondents cited a change in seizures (19%, n = 88), mental health difficulties (34%, n = 161), and sleep disruption (26%, n = 121) as the main reasons. Thirteen percent found it difficult to take medication on time. A third had difficulty accessing medical services (n = 154), with 8% having had an appointment canceled (n = 39). Only a small proportion reported having had discussions about epilepsy-related risks, such as safety precautions (16%, n = 74); mental health (29%, n = 134); sleep (30%, n = 140); and Sudden Unexpected Death in Epilepsy (SUDEP; 15%, n = 69) in the previous 12 months. These findings suggest that people with epilepsy are currently experiencing health changes, coupled with inadequate access to services. Also, there seems to be a history of poor risk communication in the months preceding the pandemic. As the UK witnesses a second COVID-19 wave, those involved in healthcare delivery must ensure optimal care is provided for people with chronic conditions, such as epilepsy, to ensure that avoidable morbidity and mortality is prevented during the pandemic, and beyond.

Income security during periods of ill health: a scoping review of policies, practice and coverage in low-income and middle-income countries.

The COVID-19 pandemic is a reminder that insufficient income security in periods of ill health leads to economic hardship for individuals and hampers disease control efforts as people struggle to stay home when sick or advised to observe quarantine. Evidence on income security during periods of ill health is growing but has not previously been reviewed as a full body of work concerning low-income and middle-income countries (LMICs). We performed a scoping review to map the range, features, coverage, protective effects and equity of policies that aim to provide income security for adults whose ill health prevents them from participating in gainful work. A total of 134 studies were included, providing data from 95% of LMICs. However, data across the majority of these countries were severely limited. Collectively the included studies demonstrate that coverage of contributory income-security schemes is low, especially for informal and low-income workers. Meanwhile, non-contributory schemes targeting low-income groups are often not explicitly designed to provide income support in periods of ill health, they can be difficult to access and rarely provide sufficient income support to cover the needs of eligible recipients. While identifying an urgent need for more research on illness-related income security in LMICs, this review concludes that scaling up and diversifying the range of income security interventions is crucial for improving coverage and equity. To achieve these outcomes, illness-related income protection must receive greater recognition in health policy and health financing circles, expanding our understanding of financial hardship beyond direct medical costs.

Self-regulation of commitment to reduce cigarette consumption: mental contrasting of future with reality.

The model of fantasy realisation (Oettingen, 2000) specifies mental contrasting of a positive future with negative reality as a strategy that creates strong goal commitments. We propose that fantasies about a positive and negative future produce strong goal commitments when contrasted with the respective reality. The present study supports this hypothesis in the area of reducing cigarette consumption. Mental contrasting of a positive future with negative reality as well as mental contrasting of a negative future with positive reality led to taking immediate action when participants had high expectations of success. Results indicate that both fantasies about a positive future and a negative future can be used to commit to goals that benefit health and prevent disease.

Practice paper of the American Dietetic Association: Home care--opportunities for food and nutrition professionals.

Home care continues to expand. With this growth are opportunities for registered dietitians (RDs) to demonstrate the vital role that they play not only in providing optimal nutrition care, but also in contributing to each patient's quality of life. Home care nutrition services range from individual patient counseling to managing and monitoring parenteral nutrition. RDs' knowledge of nutrition, reimbursement, and new technologies position them to improve care and control costs. Current roles and responsibilities along with emerging areas of professional growth give RDs a multitude of options to provide and expand their services and value in home care.

Unilateral balance performance in female collegiate soccer athletes.

The Star Excursion Balance Test (SEBT) is a unilateral balance task designed to evaluate dynamic postural control. This investigation explored the relationship between limb preference, strength, and performance on the SEBT in NCAA Division I, female collegiate soccer athletes (nonsoccer, n = 11; soccer, n = 12). Each participant completed maximal, concentric test efforts at a velocity of 90 degrees x s(-1) for supine ankle dorsiflexion (ADF) and plantarflexion (APF) and at 60 degrees x s(-1) for the seated leg extension (LE) and flexion (LF) and supine hip extension (HE) and flexion (HF). In addition, participants performed maximal SEBT reaches in the anterior, medial, and posterior directions. All testing was completed on both limbs. These results indicate that SEBT performance is similar for both limbs in both groups. The soccer group, however, reached significantly farther than the nonsoccer group, suggesting that the SEBT may be sensitive to training status and/or sport-related adaptations. The concentric strength results indicate that despite group differences in all strength tests, strength in general was not highly correlated to SEBT performance. Thus, neuromuscular factors above and beyond strength may have accounted for the group differences in SEBT performance. The SEBT may be a useful tool for determining the relative effectiveness of an intervention designed to improve postural control.