ABSTRACT
Purpose: The purpose of this study is to assess the effect of social isolation of minors with a parent or grandparent suffering from amyotrophic lateral sclerosis (ALS) and to determine whether the psychological support offered by an Italian no-profit association helped them to manage stress. Methodology: This study followed a qualitative research design. The participants responded to in-depth interviews that were processed with inductive thematic analysis. Findings: Five themes emerged: feedback on the psychological intervention;learning and changes after the intervention;discourses on illness and death in the family;experiences and difficulties during the lockdown and suggestions for other peers who might face the same situation. Social Implications: Psychological support is necessary for these minors, and it helped them to manage both the stress of living with ALS and the limitations of social relationships during the pandemic. It showed the importance of authentic and honest communication about illness and death that allowed minors to manage anxiety and fear. Positive reinterpretation of these experiences by transforming them into opportunities was also revealed. Originality: Studies on families with ALS patients are numerous, but studies on children of these patients are still rare, and no study has investigated the impact of the COVID-19 pandemic on these children. This research investigated a topic that has not been covered previously and it also provided the opportunity to know how these children, preadolescents and adolescents living in an already complex environment, have experienced lockdown and restrictions. The study also enriched the literature on this important issue. (PsycInfo Database Record (c) 2022 APA, all rights reserved)
ABSTRACT
Purpose: The purpose of this study is to assess the effect of social isolation of minors with a parent or grandparent suffering from amyotrophic lateral sclerosis (ALS) and to determine whether the psychological support offered by an Italian no-profit association helped them to manage stress.Methodology: This study followed a qualitative research design. The participants responded to in-depth interviews that were processed with inductive thematic analysis.Findings: Five themes emerged: feedback on the psychological intervention;learning and changes after the intervention;discourses on illness and death in the family;experiences and difficulties during the lockdown and suggestions for other peers who might face the same situation.Social Implications: Psychological support is necessary for these minors, and it helped them to manage both the stress of living with ALS and the limitations of social relationships during the pandemic. It showed the importance of authentic and honest communication about illness and death that allowed minors to manage anxiety and fear. Positive reinterpretation of these experiences by transforming them into opportunities was also revealed.Originality: Studies on families with ALS patients are numerous, but studies on children of these patients are still rare, and no study has investigated the impact of the COVID-19 pandemic on these children. This research investigated a topic that has not been covered previously and it also provided the opportunity to know how these children, preadolescents and adolescents living in an already complex environment, have experienced lockdown and restrictions. The study also enriched the literature on this important issue.
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.