A pilot study on sports activities in pediatric palliative care: just do it.

BACKGROUND: There has been a growing interest in studying the value of physical exercise in children with disabilities or chronic health conditions because of evidence of improvement in quality of life, social acceptance, and physical functioning. However, only scant evidence exists for routine sports activities in children requiring pediatric palliative care (PPC), and in most cases, such evidence has been collected in oncological patients. The Pediatric Hospice of Padua is the referral center for PPC in the Veneto region (northern Italy). Starting from the experience of this PPC center, this pilot study aims to describe the personal experience of children and young people who practice physical activity and their caregivers' perspectives, focusing particularly on the emotional and social impact of exercise and sports practice. METHODS: Patients involved in at least one regular and structured sports activity were included in the pilot analysis. Two different ICF-CY (International Classification of Functioning, Disability and Health-Children and Youth Version) scales ("Body Function" and "Activity and Participation") were filled out to assess the children's global functional competence. Two online ad hoc questionnaires were created and administered to children, when able to respond, and caregivers. RESULTS: A total of 9% of patients reported being involved in a sports activity. All children who played sports did not have indications of cognitive retardation. The most practiced sport was swimming. The use of standardized methods such as ICF-CY shown that severe motor impairments do not limit sports accessibility. Questionnaires result suggest that sports are a positive experience for both children needing PPC and their parents. Children encourage other children to do sports and can find the positive side even in difficulties. CONCLUSION: Since PPC is encouraged as early as the diagnosis of incurable pathologies, the inclusion of sports activities in the context of a PPC plan should be considered from the perspective of improving quality of life.

The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis.

Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease's natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care (PPC) network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of palliative care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child's needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019-2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region (Italy). The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum.

The use of medical cannabis in pediatric palliative care: a case series.

BACKGROUND: Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (PPC); however, little evidence is available in this setting. CASE PRESENTATION: We aimed to describe a clinical experience in a setting where high-level evidence may not be obtained. We report our clinical experience in a pediatric palliative care department in Italy. Caregivers reported changes in intensity and frequency of pain and epilepsy events. Six patients received a titrated plant extract of cannabis sativa for 1 year. Only mild and transient adverse events occurred: drowsiness, euphoria, restlessness and tachycardia; the resolution was either spontaneous or obtained by modifying the administration schedule. Treatment was never discontinued. No overdoses occurred. All patients experienced seizures during the pre-treatment observation period, and obtained a reduction in seizure frequency, although with variable extent while receiving cannabis. In addition, a benefit on pain was observed, based on the caregiver's evaluation, and a reduction of analgesic use. CONCLUSION: Our experience suggests that a titrated plant extract preparation of medical cannabis may be useful to control treatment-resistant pain and epilepsy in PPC patients.

Notification of Unexpected, Violent and Traumatic Death: A Systematic Review.

Background: The way the death of a person is communicated can have a profound impact on the bereavement process. The words and expressions that are used to give the tragic news, the characteristics of who communicates it, the physical setting in which the notification is given, the means used (e.g., in person, via phone call, etc.) are just some of the factors that can influence the way survivors face one of the most difficult moments in their lives. Aim: To review the literature on the topic of death notification to verify the state of the art related to this important procedure. Methods: A systematic review was conducted with PRISMA criteria on English-written materials produced from 1966 to 2019. Results: Out of the initial 3,166 titles considered, 60 articles were extracted for this review. A content analysis has revealed four main areas of interest: (1) protocols and guidelines; (2) emotional reactions of recipients and notifiers; (3) professional figures involved in the notification process; and, (4) types of death. Discussion: The communication of death represents a complex and stressful experience not only for those who receive it but also for those who give it. Alongside the acquisition of a necessary technique and execution methods, the process should involve the selection of notifiers based on personality characteristics and communication styles. Conclusion: Indications for the need of better training and protocols sensitive to different circumstances emerge. Adequate preparation can positively influence the quality of communication and the effects it produces, both on recipients and notifiers. In vocational training, more space should be devoted to this demanding task.

Forgiveness and Blame Among Suicide Survivors: A Qualitative Analysis on Reports of 4-Year Self-Help-Group Meetings.

This article presents the qualitative analysis of reports obtained through participant observations collected over a 4-year period in a series of suicide survivor self-help group meetings. It analysed how grievers' healing was managed by their own support. The longitudinal study was focused on self/other blame and forgiveness. Results show how self-blame was continuously present along all the period and how it increased when new participants entered the group. This finding indicates that self-blame characterizes especially the beginning of the participation, and that any new entrance rekindles the problem. However, no participant had ever definitively demonstrated self-forgiveness, while a general forgiveness appeared when self-blame stopped. It is also suggested how to facilitate the elaboration of self-blame and forgiveness.