Parental Quality of Life and Impact of Multidisciplinary Intervention for Children with Autism Spectrum Disorders: A Qualitative Study.

The presence of a child with Autism Spectrum Disorder (ASD) in the family can have a negative impact on parental Quality of Life (QoL), but evidence on how treatments for children with ASD can affect parental QoL is currently limited. In this qualitative study, we develop a semi-structured interview in order to investigate the impact of ASD on the QoL of mothers and fathers from a subjective perspective, as well as the effect of the intervention on their QoL and adjustment process. The sample consisted of 31 parents of children with ASD severity 2 or 3, aged 5 to 11 years, undergoing a multidisciplinary intervention. In order to identify emerging themes from the interview transcripts, a Thematic Analysis was conducted using a bottom-up approach. We identified three main themes relating to parental QoL (ASD impact on QoL, useful external resources, QoL improvement-related factors) and five themes relating to parents' views on the intervention (positive impact on parent, dissatisfaction with previous interventions, parental involvement, useful features, critical issues). The results provide indications of the process of parental adaptation and the components of interventions that foster an improvement in their QoL. In conclusion, living with a child with ASD can have a significant influence on a parents' QoL, not just physically and emotionally, but also in terms of general goals, family structure, and social interactions.

Parental quality of life, child adjustment and adult attachment in parents of children and adolescents with Autism Spectrum Disorder.

BACKGROUND: Parents of children and adolescents with Autism Spectrum Disorder (ASD) may experience a lower quality of life (QoL) than parents of offspring with typical development. However, factors associated with parental QoL are not yet fully understood. AIMS: This study aimed to investigate the relationships between parental QoL, child adjustment and adult attachment among parents of children and adolescents with ASD. METHODS AND PROCEDURES: One hundred and eighty-eight parents of children and adolescents diagnosed with ASD completed a group of self-report questionnaires on sociodemographic variables, QoL (i.e., overall QoL and ASD symptoms-related parental QoL), child adjustment (i.e., offspring's total problems and prosocial behaviors) and adult attachment. OUTCOMES AND RESULTS: Structural equation modeling revealed that the overall parental QoL was negatively related to children's total problems and positively associated with prosocial behaviors, as well as with higher levels of secure attachment and lower levels of fearful attachment styles. Additionally, ASD symptoms-related parental QoL was negatively associated with the offspring's total problems. CONCLUSIONS AND IMPLICATIONS: This suggests that child characteristics may interact with parental characteristics to either enhance or compromise the QoL of parents of children and adolescents with ASD. Implications of these findings for promoting parental QoL are discussed.

Italian Hospital Teachers' Perceptions of Technological and Methodological Innovations after the COVID-19 Pandemic.

The COVID-19 pandemic has had a significant long-term impact on education worldwide. In many countries, schools and universities experienced a rapid switch to emergency remote teaching and learning (ERTL), which affected many education systems in the 2020-21 school year. This was true for the Italian educational context as a whole, including School in Hospital (SiHo) services. This study explored how the SiHo functioned in Italy during the 2020-2021 school year. The aim was to explore what, if any, changes the emergency brought about in educational practices and in the adoption of technologies in this specific context, with a particular focus on any differences between school levels. The study was conducted with 252 SiHo teachers using a questionnaire format. The results showed that after the forced adoption of distance modes during the spring 2020, face-to-face teaching returned to be the prevalent mode in the 2020-2021 school year, with some exceptions for upper-secondary school students (covered by ministerial provisions). The teaching approach that SiHO teachers prefer, both for face-to-face and distance lessons, remains frontal instruction, probably given the particular needs of their students. Younger students probably experienced the most significant changes due to the limits imposed on interpersonal contact in hospitals, which prevented group work and play, previously commonly adopted by kindergarten and primary school teachers. In terms of technology integration in educational practice, teachers stated that they had acquired greater competence in the use of a variety of technological resources.

Can a Peer Support the Process of Self-Management in Narcolepsy? A Qualitative Narrative Analysis of a Narcoleptic Patient.

INTRODUCTION: Narcolepsy type 1 (NT1) is a chronic and rare sleep disorder typically arising during adolescence and young adulthood. The main symptoms are excessive daytime sleepiness and cataplexy, a prototypical fall down elicited by huge emotions. Social relationships, school, work, and general health perception are frequently impaired in patients, who often show lower quality-of-life scores. We report which management strategies a young patient (DMG) adopted to cope with NT1 during his growth, avoiding exhibiting serious impairments to his global functioning. METHODS: A clinical psychologist explores the history of the patient's disease and the self-acquired strategies used to cope with the symptoms. The patient's global adaptation to the disease, stress-related managing skills, and overall well-being are assessed by standardized scales [Illness Behavior Questionnaire (IBQ); Coping Orientations to Problems Experienced (COPE); and Psychological General Well-Being Index (PGWBI)]. We conducted a qualitative analysis of the patient's narration of his illness according to the procedure of the Grounded Theory. The MAXQDA software program was used to code the verbatim transcript. RESULTS: From the qualitative analysis of the interview, three thematic cores emerged: 1) the disease history; 2) the patient's friendship with AD, a friend of his age diagnosed with NT1 since childhood; 3) the strategies used to deal with his symptoms before the diagnosis of NT1 and the related treatment. From the psychometric tests, the patient presents good coping strategies in dealing with stressful problems and events based mainly on acceptance and positive reinterpretation of the stressful situation. CONCLUSION: This case shows that comparing peers of the same age and suffering from the same illness improve the patient's self-management ability to cope and live well with NT1.

Giving a voice to cataplectic experience: recollections from patients with narcolepsy type 1.

STUDY OBJECTIVES: The objective of this study was to assess the narratives from the recalled accounts of cataplexy attacks of patients with narcolepsy type 1 (NT1). METHODS: Twenty-two drug-naive adult patients meeting the International Classification of Sleep Disorders criteria for the diagnosis of NT1 referring to the Narcolepsy Center of the University of Bologna in the year 2017 underwent a semistructured interview focusing on their personal experiences during the cataplectic attacks. Verbatim transcripts were analyzed by thematic analysis of elementary contexts using T-LAB software. RESULTS: The thematic analysis performed on the entire body text showed 3 clusters that explained 36.2%, 34.1%, and 29.7% of the variance, respectively: a cluster related to situations that trigger attacks of cataplexy, a cluster to bodily sensations, and another control strategies during episodes. The thematic content highlighted a tendency to disregard emotional experiences, thus affecting the ability to name, recognize, and regulate critical emotions. CONCLUSIONS: The study showed that patients with NT1 spoke of their cataplectic attacks in terms of self-reported bodily experiences, trigger situations, and their management. Therefore, patients may have developed strategies of symptom management focused on emotion avoidance and/or inhibition.

Exploring the Impact of the COVID-19 Pandemic on Italy's School-in-Hospital (SiHo) Services: The Teachers' Perspective.

The abrupt interruption of face-to-face educational activities imposed by the Italian government in response to the COVID-19 pandemic required a rapid switch to distance learning to guarantee continuity in education. The same applied to the School-in-Hospital (SiHo) services. This paper explores the impact of the COVID-19 pandemic in this specific context; we investigated the organizational changes and strategies adopted by the SiHo services and individual teachers to meet the challenges posed by this change in the educational paradigm. Moreover, the paper outlines teachers' visions about possible educational scenarios for the next academic year (2020-2021). Using qualitative methodology, the study took the form of a group interview involving 12 teachers working across 8 children's hospitals in Italy. The thematic analysis revealed a number of themes for further investigation. In terms of the actual situation during the pandemic, we identified critical issues and facilitating factors that occurred in distance learning with hospitalized students. One significant theme that emerged from the interviewees' narratives involved their general attitudes towards distance learning and their individual approaches to the pandemic. The relationship of hospitalized students to mainstream schools also proved to be an important theme, not only regarding the recent past but also the future. Finally, teachers hypothesized future distance learning scenarios for the new school year, highlighting the challenges to be faced from several viewpoints (methodological, organizational, technological, etc.).

Hospital School Teachers' Sense of Stress and Gratification: An Investigation of the Italian Context.

In their daily teaching in hospitals, teachers interact within a complex interpersonal and professional network. The present study investigated what kind of professional relationships hospital teachers have with other staff in their daily work and which factors they perceive as being either stressful or gratifying in their professional activities. An online questionnaire consisting of multiple-choice items and open-ended responses was developed and distributed to all school-in-hospital teachers in Italy. A representative sample of 602 teachers responded. Quantitative findings were analyzed using descriptive statistics. The open-ended responses were analyzed by combining qualitative content analysis with statistical textual analysis using T-LAB software. The results confirm the complexity of the setting in which hospital teachers operate, one that is characterized by the wide variety of professional and non-professional roles the teachers perform. Four clusters were defined covering both the stress dimensions (Illness, Work Fragmentation, Organization, and Interpersonal Relationships) and the gratifying aspects (Work Recognition, Normalization, Human Contact, and Interpersonal Relationships). The implications of these findings for the management of hospital schools are discussed.

Eating behaviour and body image in a sample of young athletes.

UNLABELLED: BACKGROUND ANDAIM: Adolescence is a period of great risk for the development of eating disorders since many teenagers engage in long periods of dieting or exhausting sports activities in order to achieve their ideal body image. Research has shown that a potential majority of athletes display attitudes very similar to those observed in cases involving disturbed eating behaviour, particularly with regard to their exaggerated attention to their body image and the type of diet that they consider necessary for their activities. The aim of this study is to analyze young athletes dedicated to attaining the mesomorphic physical ideal and to identify possible dysfunctional eating habits like risk factors in the development of more serious disturbances. We further plan to evaluate possible differences in how members of the sample group perceive their bodies and behave in connection with their diet. METHODS: The sample is made up of 109 males and females, aged 16-24 years. Participants completed the Pisa Survey for Eating Disorders and underwent measurements for the calculation of body mass index (BMI). RESULTS: The young athletes in our sample show a markedly distorted perception of their own bodies. They show a widespread presence of eating behaviour that is not functional to high athletic achievement as well as a series of noteworthy risk factors connected with the onset of eating behaviour disturbances. CONCLUSIONS: The obtained results underscore the need for primary projects in prevention against and awareness of eating problems and awareness of dysmorphic and phobic disturbances in young athletes.