MJ Hendriks

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Papers by MJ Hendriks

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

Acta Paediatrica

Due to scarce available national data, this study assessed current attitudes of neonatal caregive... more

Garantir lautodtermination en cas dincapacit de discernement

Bulletin des Médecins Suisses

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Auch bei Urteilsunfhigkeit selbstbestimmt bleiben

Schweizerische Ärztezeitung

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Using Narratives to Improve Health Literacy – An Ethical and Public Health Perspective

Public Health Ethics Analysis

Most people have little interaction with the health system and tend to be unfamiliar with the pre... more Most people have little interaction with the health system and tend to be unfamiliar with the prevention, diagnosis, and treatment of even common health conditions. In case of illness, the medical information delivered by health professionals can be overwhelming because of its complexity, unfamiliar terminology, and use of statistical data. Understanding such information requires specific “health literacy” skills. Health literacy empowers individuals to exercise their autonomy and self-determination regarding health-related matters. This chapter explores how health literacy and ethical questions are interrelated as illustrated using actual patient narratives of a woman’s pregnancy experiences. The narratives were collected as part of the Swiss DIPEx (Database of individual patients’ experiences) database. We demonstrate that narratives of health experiences can be used to enhance health literacy. Firstly, narratives can convey complex information in an easily understandable manner. ...

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Perinatal loss and parental loneliness: Narratives of late termination of pregnancy

Death Studies, 2021

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

Psycho-Oncology, 2020

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

Swiss medical weekly, 2020

INTRODUCTION Implementation of screening for psychological distress in populations at risk, as re... more 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. The emotion thermometer, a short and validated assessment tool to screen for psychological distress, might facilitate implementation of psychological screening in Swiss CCS follow-up care. AIMS OF THE STUDY To inform implementation strategy and assess readiness of centres to integrate standardised psychological screening, we conducted a cross-sectional survey. We describe healthcare professionals’ opinions on (i) the current standard of psychological screening i...

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At the Beginning and the End: End of Life Decision-Making for Extremely Preterm Infants

An extremely premature birth often comes unexpectedly to parents, which raises a series of diffic... more An extremely premature birth often comes unexpectedly to parents, which raises a series of difficult decisions regarding life-sustaining measures. The present thesis aims at providing more in-depth information on end-of-life decision-making for extreme preterm infants. In the general introduction I illustrate the background on neonatal intensive care for babies born extremely premature. This thesis is structured in three parts: a population survey, parental interviews and a theoretical reflection. In the first part, the societal attitudes with regard to withholding or withdrawing care of extreme preterm infants in Switzerland are explored. A number of 1210 participants completed the survey (response rate 24%). Our findings revealed that the Swiss population highly valued shared decision-making. The socio-cultural background of participants influenced attitudes toward end-of-life decision-making. In addition, participants’ self-rated solidarity was high towards extreme preterm infant...

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Follow-up Care in Childhood Cancer Survivors: Improving Services in Switzerland

The survival rate of children and adolescents diagnosed with cancer has markedly improved in the ... more The survival rate of children and adolescents diagnosed with cancer has markedly improved in the last decades and now exceeds 85% in Switzerland [1]. This results in about 5700 childhood cancer survivors living in Switzerland, who have been diagnosed before age 14 years [2]. Most childhood cancer patients are cured from cancer and have decades of life ahead of them. Therefore, effective strategies to promote long-term health and quality of life are important. In this paper, we will briefly present major late effects experienced by childhood cancer survivors, and describe ongoing initiatives in the field of childhood cancer survivorship and long-term follow-up care (LTFU) in Switzerland.

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“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

Quality of Life Research, 2021

Purpose With increasing numbers of childhood cancer survivors (CCS), it is important to identify ... more 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. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer. Results Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and ...

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Extreme prematurity in Switzerland: the silent suffering of parents whose children do not survive

Bioethica Forum, 2018

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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 ... more 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 and their families 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. Methods Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. Results Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS’ concerns. Our findings indicated that s...

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In Response

Journal of Obstetric, Gynecologic & Neonatal Nursing, 2018

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

Bioethics, 2018

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

BMC pediatrics, Jan 9, 2018

After publication of the original article [1], the corresponding author noticed the given names a... more

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

BMC pediatrics, Feb 22, 2018

In the last 20 years, the chances for intact survival for extremely preterm infants have increase... more 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. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between...

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Exploring societal solidarity in the context of extreme prematurity

Swiss Medical Weekly, 2017

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

Swiss Medical Weekly, 2017

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

Journal of obstetric, gynecologic, and neonatal nursing : JOGNN, Jan 24, 2017

To explore parental attitudes and values in the end-of-life decision-making process of extremely ... more To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks). Hermeneutically oriented qualitative research design with in-depth interviews. Level III NICU in Switzerland. Purposive sample of seven couples, five mothers, and one father (20 parents). Qualitative content analysis was used to categorize and interpret themes from parents' narratives. Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical ...

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

Qualitative health research, 2017

This study on end-of-life decisions in extremely preterm babies shows that the parents under stud... more 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. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.

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

Acta Paediatrica

Due to scarce available national data, this study assessed current attitudes of neonatal caregive... more