Category: Abstracts

Bereavement care offered by the Pediatric Supportive Care Team in University Hospital Motol, Prague

Sylvie Stretti

Bereavement care is offered by the Pediatric Supportive Care Team in University Hospital Motol to all families where a child cared for by the team has died. Care is offered not only to parents, but also to siblings and other bareaved person, within 13 months of the death of a child patient. The lecture will introduce the method of providing bereavement care by the Motol team, the method of involvement of individual professions and the basic principles of therapeutic work with bereaved people.

Spiritual care in pediatric palliative medicine

Jakub Formánek

Spiritual needs are among the urgent topics of families of children with life-limiting and life-threatening diagnoses and belong in the competence of the chaplain of the Children’s Supportive Care Team of the University Hospital in Motol. Using the example of a case study, we will present spiritual care in pediatric palliative medicine and the challenges associated with it.

RESILIENCE of ECI: lessons of war from Ukraine

Anna Kukuruza

Ukraine has been building the ECI system for two decades now. It’s been a journey from the medical model through family-oriented, center-based practices to family-centered, home-based work performed by a transdisciplinary team.

There had been many steps taken and achievements made to develop ECI before February 24, 2022, when Russia’s large-scale aggression against Ukraine started.

The provision of ECI services was not interrupted after the outbreak of active hostilities that led to mass migration of families and specialists throughout Ukraine and abroad. The experience of the war has shown that all the basic principles of modern Early Intervention ensured its stability and ability to function successfully even in such harsh conditions. The conducted studies showed that these tragic circumstances brought together parents and professionals and created a new context for forging partnerships and mutual support.

The ECI service

1) ensured continuity and offered a broad range of support (emotional, informational and material) to families; helped to maintain social contacts and fostered a sense of stability in a situation of dramatic changes;

2) responded to parents’ expectations regarding the development of their children, even in the circumstances of the war, and helped to avoid regresses in children’s development;

3) helped to maintain and increase the levels of parents’ competence and self-efficacy in a situation characterized by inadequate safety, instability and a change of familiar environment.

The world experience of going through military conflicts shows that the need for ECI will grow. In war and post-war situations, special attention should be paid to infant mental health, which is an important part of work in ECI. Each family needs support to prevent the negative impact of the current traumatic experience affecting both child development and family functioning.

Development of transdisciplinary approach – where are we now?

Ana Validžić Požgaj

Snježana Seitz

According to literature and numerous studies and system perspectives,  transdisciplinarity is emphasized as an ideal to strive for. Mali dom continuously collaborates with experts from various disciplines, starting with the neonatal units. Early intervention program at Day care centre Mali dom Zagreb  programs determine eligibility through an evaluation conducted by a transdisciplinary team based on informed clinical opinion and utilizing an approved developmental inventory tool. There are three categories of eligibility: 1. Infants and Toddlers with an Established Condition or Conditions,   2. Infants and Toddlers with Established Developmental Delay or Delays in two or more developmental domains, 3. Infants and Toddlers at Risk for Developmental Delay(s).

Since no one discipline is more effective than another in providing early intervention services, particularly for children younger than 1 year of age, this cross discipline work ensures that all are working on the same comprehensive outcomes and strategies and so they are more likely to be realized. But how truly can we claim to follow the principles of transdisciplinarity. How effective is this approach and what are the weak points and challenges?

The role of the general practitioner for children and adolescents in palliative care

Kateřina Konopásková

In my short statement I will clarify possibilities and role of General Practitioner in palliative care for pediatric patients. Brief case report will introduce our 3 years old patient ,  care of him, practitioners opportunities eventually difficulties in cooperation with supporting organizations.

Comprehensive care center for children with serious illnesses and telemedicine

Jan Hálek

Children with serious illnesses and their families face many challenges. In particular, the current care system lacks interdisciplinary care coordination and planning. The communication presents one possible model.

Diversity of support for families in early intervention

Markéta Skalická, Magdaléna Kostelecká

EDA provides support to families with children with visual or multiple impairment. The basis of our service is a heterogeneous team of experts, so our service takes place on several levels.

We offer psychological support for parents, support for the development of visual perception and training of compensatory skills, including solutions for central visual perception disorders, consultancy for the child’s motor development, social consultancy, support in finding solutions for assistive technologies and rehabilitation aids. Our mission is also interdisciplinary cooperation with experts from related fields. Parents can use accompaniment to specialist clinics, pre-school facilities.

The development of special EDA PLAY applications is also an integral part of our professional activity.

In my lecture, I will present specific situations illustrating the possibility of inpatient and mobile hospice to help and support a child and family with palliative care needs. I can also easily touch on system and organizational circumstances.

Homesharing and its importance for the independence of the child and parents

Kateřina Kotasová

Eva Černá

Families caring for a child with a disability do not have enough support resources. Homesharing, the introduction of which in the Czech Republic is supported by the Abakus foundation, comprises shared care that provides more than just relief for caring families. It also brings new stimuli and social contacts for the child, and strengthens the child’s individuality in environments outside the family home. There is a separation of the child from the parents, but also of the parents from the child, which has proven to be equally significant. Homesharing can therefore play a crucial role in preparing a child with a disability for an independent life in adulthood.

Cooperation and capabilities of specialized palliative care providers

Mahulena Exnerová

Serious life-limiting or life-threatening diseases are comparatively rare in child populations, but according to the latest research, their prevalence continues to increase. Pediatric palliative care comprises comprehensive multidisciplinary care for such children and their families. Core elements of pediatric palliative care include not only open and empathetic communication with the child and their caregivers about the options and goals of treatment for the given disease, but also the provision of maximum comfort and the enablement of the best possible life for both child and family. All is done in accordance with the preferences of the child and their caregivers. It is important that different modalities of care are available and that they are coordinated as much as possible. If, for any reason, simple discharge from the hospital emergency bed into home care is not possible, pediatric palliative care should also include the provision of long-term intensive nursing care in dedicated wards (with and without ventilation). Such care must be closely followed up with outpatient care (outpatient clinics for palliative medicine, other specialist outpatient clinics, pediatric services), as well as with mobile specialized palliative care if the condition of the child discharged into home care is unstable, or if the child is at the end of life and the family wishes for them to be cared for at home.