Palliative care services in paediatric oncology centres across Europe: A cross-sectional survey.

Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers.

Aim: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC).

Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns.

Background: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process.

"I don't take for granted that I am doing well today": a mixed methods study on well-being, impact of cancer, and supportive needs in long-term childhood cancer survivors.

Purpose: With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS' needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors' wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors' unmet needs.

Method: In this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs.

National Divergences in Perinatal Palliative Care Guidelines and Training in Tertiary NICUs.

Despite established principles of perinatal palliative care (PnPC), implementation into practice has shown inconsistencies. The aim of this study was to assess PnPC services, examine healthcare professionals (HCPs) awareness and availability of PnPC guidelines, and describe HCPs satisfaction with PC and guidelines. A nationwide survey was conducted in Swiss tertiary NICUs between April-November 2019.

The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer.

Background: The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer.

Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants.

Aim: Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-making.

Methods: Self-administered web-based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible.

The unmet needs of childhood cancer survivors in long-term follow-up care: A qualitative study.

Objective: Evidence suggests benefits of long-term follow-up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long-term survivorship.

Healthcare professionals' opinions on psychological screening in follow-up care for childhood cancer survivors.

Introduction: Implementation of screening for psychological distress in populations at risk, as recommended in existing guidelines, can be challenging on different levels: structural, organisational and personal (provider and patient). A specific group at risk for psychological distress, including anxiety and depression, is the growing population of childhood cancer survivors (CCS). In many countries, including Switzerland, the standardised assessment of psychological late effects during follow-up care is not yet established.

Correction to: Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses.

After publication of our article [1] it was brought to our attention that we did not have permission to reproduce the questionnaire in Additional File 1.

Correction to: decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses.

After publication of the original article [1], the corresponding author noticed the given names and family names of the members included in the Swiss Neonatal End-of-Life Study Group were incorrectly reverted.

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses.

Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today.

Fragile lives with fragile rights: Justice for babies born at the limit of viability.

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment.

Sources of distress for physicians and nurses working in Swiss neonatal intensive care units.

Background: Medical personnel working in intensive care often face difficult ethical dilemmas. These may represent important sources of distress and may lead to a diminished self-perceived quality of care and eventually to burnout.

Aims Of The Study: The aim of this study was to identify work-related sources of distress and to assess symptoms of burnout among physicians and nurses working in Swiss neonatal intensive care units (NICUs).

"You Can Only Give Warmth to Your Baby When It's Too Late": Parents' Bonding With Their Extremely Preterm and Dying Child.

This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care.

End-of-Life Decision Making for Parents of Extremely Preterm Infants.

Objective: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks).

Design: Hermeneutically oriented qualitative research design with in-depth interviews.

Setting: Level III NICU in Switzerland.

Exploring societal solidarity in the context of extreme prematurity.

Question: Extreme prematurity can result in long-term disabilities. Its impact on society is often not taken into account and deemed controversial. Our study examined attitudes of the Swiss population regarding extreme prematurity and people's perspectives regarding the question of solidarity with disabled people.

Attitudes towards decisions about extremely premature infants differed between Swiss linguistic regions in population-based study.

Aim: Studies have provided insights into the different attitudes and values of healthcare professionals and parents towards extreme prematurity. This study explored societal attitudes and values in Switzerland with regard to this patient group.

Methods: A nationwide trilingual telephone survey was conducted in the French-, German- and Italian-speaking regions of Switzerland to explore the general population's attitudes and values with regard to extreme prematurity.