Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review

Previous research has examined several parental, child-related, and contextual factors associated with parental quality of life (QoL) among parents with a child or an adolescent with autism spectrum disorders (ASD); however, no systematic review has examined the relationship between parental QoL and parental involvement in intervention. To fill this gap, a systematic review was conducted using four electronic databases and checked reference lists of retrieved studies. Records were included in the systematic review if they presented original data, assessed parental QoL, and involvement in intervention for children or adolescents with ASD, were published in peer-reviewed journals between 2000 and 2020, and were written in English. Among the 96 screened full-texts, 17 articles met the eligibility criteria. The selected studies included over 2000 parents of children or adolescents with ASD. Three categories of parental involvement (i.e., none, indirect, direct) were identified, which varied across studies, although most had direct parental involvement. The results from this review show that increased parental involvement in the intervention for children or adolescents with ASD may be one way to promote their QoL. However, further research specifically focused on parental involvement during the intervention for children and adolescents with ASD is warranted

Parental quality of life and involvement in intervention for children or adolescents with autism spectrum disorders: A systematic review

Previous research has examined several parental, child-related, and contextual factors associated with parental quality of life (QoL) among parents with a child or an adolescent with autism spectrum disorders (ASD); however, no systematic review has examined the relationship between parental QoL and parental involvement in intervention. To fill this gap, a systematic review was conducted using four electronic databases and checked reference lists of retrieved studies. Records were included in the systematic review if they presented original data, assessed parental QoL, and involvement in intervention for children or adolescents with ASD, were published in peer-reviewed journals between 2000 and 2020, and were written in English. Among the 96 screened full-texts, 17 articles met the eligibility criteria. The selected studies included over 2000 parents of children or adolescents with ASD. Three categories of parental involvement (i.e., none, indirect, direct) were identified, which varied across studies, although most had direct parental involvement. The results from this review show that increased parental involvement in the intervention for children or adolescents with ASD may be one way to promote their QoL. However, further research specifically focused on parental involvement during the intervention for children and adolescents with ASD is warranted

Prioritization of COVID-19 vaccination. The added value of the “VALIDATE” approach

Prioritization of COVID-19 vaccines is one of the most relevant topics in the current pandemic emergency. Prioritization decisions are political decisions that are value-laden, and as such of ethical nature. Despite the clear political and ethical nature of this topic, prioritization decisions are often interpreted and presented as scientific decisions. The aim of this article is twofold. First, we aim to show critical points that characterize certain pandemic vaccination plans from the ethical viewpoint using four dimensions (problem definitions, incorporation of different perspectives, context, and specification). The four dimensions were drawn from findings of the European project “VALIDATE” (VALues In Doing Assessments of healthcare TEchnologies”, https://validatehta.eu). Second, we aim to reframe the issue about prioritization itself in the light of the four dimensions mentioned. Our conclusion is that policy-problem definitions, incorporation of different perspectives, contextual considerations and specification of moral principles seem to be common critical points of some vaccination plan documents. The European project “VALIDATE” seems to be able to provide a useful and profitable approach to address many of these critical points

Newborn with Ohtahara Syndrome and absence of respiratory trigger: ethical issues in the NICU|Neonata con Sindrome di Ohtahara e assenza di trigger respiratorio: questioni etiche in Terapia Intensiva Neonatale

Introduction: Ohtahara syndrome (OS) is a rare drug-resistant epileptic encephalopathy characterized by frequent tonic spasms or focal motor seizures associated with the specific electroencephalographic pattern of burst suppression. It begins in the first months of life and represents less than 4% of childhood epilepsy cases. The prognosis depends from the aetiology and is generally poor with death in most cases during early childhood. The management of severe encephalopathies associated with OS is controversial, especially regarding the strategies to ensure the well-being of young patients and their families, requiring a continuous modulation of medical interventions: from the intensity of care waiting for the diagnosis, to palliative care where a prognosis of incurability, up to the possible desist from intensive/invasive treatments when they are no longer proportionate to the current clinical situation. Objective: Through the case of M, a 38-week-old newborn, intubated and mechanically ventilated since birth due to the absence of spontaneous respiratory activity, for whom the clinical diagnosis of OS was reached at about 4 months of life, we intend to investigate the related ethical issues: a. the proportionality and ethical-clinical appropriateness of treatments in patients for whom a poor prognosis quoad vitam is reached; b. the decision-making process to be shared with the parents, those were unable to accept the irreversibility of their daughter's illness, despite the psychological support offered to them from the beginning. Discussion: In a situation of probably irreversible pathology, such as severe encephalopathy with cortico-subcortical dysfunction and electrical-clinical picture of OS, associated with the absence of respiratory trigger, in which elements capable of modifying the prognosis quoad vitam do not emerge, and it is difficult for the parents to elaborate awareness about the seriousness of the disease, it becomes difficult to identify the limits of treatments, which could take the form of unreasonable obstinacy and a painful prolongation of the dying process. In the case of M, during his hospitalization in the Neonatal Intensive Care Unit (NICU) at “A. Gemelli” Teaching Hospital IRCCS of Rome (Italy), neonatologists have constantly involved child neuropsychiatrists to search for an etiological cause and viable therapeutic options, and have requested the support in several phases of clinical ethics consultants to evaluate the proportionality and ethical appropriateness in an interdisciplinary way of the treatments in place (particularly the mechanical ventilator) and to be implemented. Conclusions: The limits of treatments and more generally questions related to the end of life are increasingly frequent ethical issues, even in the NICU, and must be constantly discussed, explored and shared within the medical team and with parents, even when communication is difficult. In the case of M, only after several interdisciplinary evaluations, a decision was reached which was also shared with the parents only after various interdisciplinary evaluations: a. to continue the palliative care already in place; b. to abstain from intensive/invasive interventions in the event of critical events; c. and to favor the welfare of the whole family, transferring M to a Pediatric Hospice, where the death occurred when the little girl was 11 months ol

Loneliness, Emotional Autonomy and Motivation for Solitary Behavior During Adolescence

Loneliness is a crucial part of people’s experience in the transition to adulthood. Several developmental tasks, such as the separation/individuation process and exploration in the interpersonal domains connected with identity acquisition, lead adolescents to seek solitary experiences. Adolescents are involved in the redefinition of their relationships with parents and peers, moving away from their dependence on the family. The aim of the present study is to assess the effects of two aspects of autonomy: emotional autonomy (separation and detachment) and autonomous motivation for solitary behavior, on parent- and peer-related loneliness during adolescence. The participants were 977 adolescents (447 males and 530 females), aged between 14 and 20 years (M = 16.31; SD = 1.57), recruited from Italian high schools. The Italian versions of the Loneliness and Aloneness Scale for Children and Adolescents, of the Emotional Autonomy Scale and of the Frequency of and Autonomy for Solitary and Interpersonal Behavior scale were administered to each participant. Structural equation models and path analysis indicate the effects of separation–individuation process dimensions both on parent- and peer-related loneliness. Specific differences emerge between the two dimensions of loneliness. Peer-related loneliness is more influenced by autonomous motivation than is parent-related loneliness, and controlled motivation mediates its relationship with separation. The relationships among the constructs are discussed in the light of the separation–individuation process and with regard to the prevention of maladaptive outcomes