The experience of children with a parent suffering from Amyotrophic Lateral Sclerosis during the COVID-19 pandemic

Ines Testoni,Jose Ramon Pernia Morales,Lorenza Palazzo,Lucia Ronconi,Gabriella Rossi,Jenny Ferizoviku

doi:10.1038/s41598-021-95338-3

Abstract

Children that have a parent with Amyotrophic Lateral Sclerosis (ALS) suffer from the progressive loss of their beloved ones. During the COVID-19 pandemic, the difficulties faced by these children have increased. The study aimed to detect whether there were differences between the minors experiencing a relative’s ALS and the minors with no experience of ALS and it aimed also to detect the impact of COVID-19 pandemic on these minors. The study involved Italian participants, in particular: the target group consisted of 38 children (7–18 years) (T0/T1); the control group consisted of 38 children (9–14 years) (T0 only). The following variables were measured: attachment with the Security Scale (SS), affects with the Positive and Negative Affect Schedule for Children (PANAS-C), behavioural problems with Strengths and Difficulties Questionnaire (SDQ), death representation with Testoni Death Representation Scale for Children (TDRS-C), self-concept with the Multidimensional Self Concept Scale (MSCS), resilience and socio-emotional skills with the Devereux Student Strengths Assessment (DESSA). The results showed higher negative affectivity (p < .001), externalising behaviours (p < .05), uncertainty in reflective function (p < .05) in the target group compared to the control one; after the COVID-19 pandemic minors in the target group showed reduced certainty of mental states (p < .05) and interpersonal and scholastic self-esteem (p < .05). The impact of ALS on these minors is significant and produces negative affect, externalizing behaviours and uncertainty of mental states. The lockdown situation due to the COVID-19 pandemic has further aggravated minors in their school and interpersonal self-esteem.

Highlights

Children that have a parent with Amyotrophic Lateral Sclerosis (ALS) suffer from the progressive loss of their beloved ones
parental reflective functioning (PRF) may be important during adolescence, because it helps teenagers cope with their developmental changes and with new social competence, facilitating dialog and coping with the conflict and negative emotions that are characteristic of that age
The present study aimed to observe the changes among children of a parent with ALS, evaluating the effectiveness of a specific psychological support intervention with these minors during the first lockdown due to the COVID-19 pandemic

Summary

Introduction

Children that have a parent with Amyotrophic Lateral Sclerosis (ALS) suffer from the progressive loss of their beloved ones. The results showed higher negative affectivity (p < .001), externalising behaviours (p < .05), uncertainty in reflective function (p < .05) in the target group compared to the control one; after the COVID-19 pandemic minors in the target group showed reduced certainty of mental states (p < .05) and interpersonal and scholastic self-esteem (p < .05). The sensory system, eye movement, sphincter control, genital functions and cognitive activities are not affected, especially in the case of bulbar onset, the brain areas for the cognitive and emotional components of empathy are impaired[18,19,20,21,22] These possible alterations impact facial expressiveness, which is critical to the mirroring process[23,24,25,26] and for RF development[27,28]. Because ALS immobilises facial motor skills, it is possible to hypothesise that it is difficult for family members, and the youngest among them, to infer the mental condition of the person suffering from this disease

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