Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that, so far, is considered always fatal. Treatments mainly consist in increasing survival and aim to improve the quality of life of people with ALS (pwALS). Social support and spirituality have been shown to play a key role in pwALS’ quality of life. Our study explored it in depth by investigating the underlying mechanisms linking social support, spirituality, and emotional well-being.

Thirty-six pwALS underwent a battery of tests evaluating emotional well-being (emotional well-being scale of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire), social support (6-item Social Support Questionnaire), and spiritual well-being (12-item Functional Assessment of Chronic Illness Therapy – Spiritual well-being). Our recruitment was web-based through the FILSLAN and the ARSLA websites as well as through Facebook® advertisements (ALS groups). Data were analyzed by Pearson correlation analysis and Process macro was used in an SPSS program to analyze the mediator variable effect.

Availability of social support, spiritual well-being, and 2 of its dimensions, i.e., meaning and peace, were positively correlated with emotional well-being. The mediational analyses showed that spiritual well-being, meaning, and peace act as mediators in the association between availability of social support and good emotional well-being.

Availability of social support and spirituality are essential for the emotional well-being of pwALS. Spirituality as a mediator between availability of social support and emotional well-being appears as real novel finding which could be explored further. Spiritual well-being, meaning, and peace appear as coping resources for pwALS. We provide practical guidance for professionals working with pwALS.

Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.

In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child’s emotional status using the same scale.

The average child’s emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children’s emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children’s emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037).

Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.

The present study aimed to investigate barriers to healthcare and their relationships to social and emotional well-being and intersectional inequalities for autistic adults during COVID-19 restrictions in the UK.

Autistic adults experience severe health inequalities and report more barriers to accessing health services compared to other both disabled and non-disabled populations. The COVID-19 pandemic has impacted many areas of society that may have increased vulnerability of autistic people to social and health inequalities, including delivery of healthcare from in-person to remote methods.

One hundred twenty-eight autistic adults who lived in the UK took part in an online survey. Measures included the Barriers to Healthcare Checklist (Short Form) and PROMIS outcome measure bank to assess emotional well-being and social support. Participants rated their agreement with items, retrospectively considering three different points of the trajectory of COVID-19 restrictions: before COVID-19, during the first lockdown in spring 2020, and in the month prior to taking the survey during autumn 2020. They completed a follow-up survey six months later to continue to assess change as restrictions in the UK were eased.

The average number of barriers to healthcare showed no significant change between all four time points. However, the nature of barriers to healthcare changed at the point of lockdown and persisted beyond the easing of COVID-19 restrictions. Barriers to healthcare were associated with some social and emotional well-being variables and demographic groups including gender, education and presence of additional disabilities. The findings may help to identify areas to target to improve access to both remote and in-person health systems for autistic people as modes of delivery continue to change over time.