Ethics in Child Health – Chapter 1: A parent’s perspective on everyday ethics (free ebook)


Chapter 1 of the book – A parent’s perspective on everyday ethics by Jennifer Johannesen from Ethics in Child Health: Principles and Cases in Neurodisability

The editors were very fortunate to engage as a co-editor Jennifer Johannesen, the parent of Owen (No Ordinary Boy), who was born with profound impairments and died at age 12 years. She offers insights, as someone with training in ethics, to share her personal experiences.

Johannesen provides three vignettes she and her family experienced in their journey with Owen into the world of the clinician. Each story provides invaluable perspectives that reflect the good intentions of the healthcare providers and systems with which their family worked. At the same time, as she describes the actions of medical professionals, it becomes apparent that there were unrecognized implications and consequences to these encounters.

About the Complete Book

Have you ever:

  • Wondered how to deal with a family that repeatedly fails to keep clinic appointments?
  • Disagreed with colleagues over a proposed course of treatment for a child?
  • Considered ways to ‘bump’ a child on a waiting to speed up their assessment?

These are a few of the scenarios faced by clinicians in neurodisability on a daily basis. Ethics in Child Health explores the ethical dimensions of these issues that have either been ignored or not recognised. Each chapter is built around a scenario familiar to clinicians and is discussed with respect to how ethical principles can be utilised to inform decision-making. Useful ‘Themes for Discussion’ are provided at the end of each chapter to help professionals and students develop practical ethical thinking. Ethics in Child Health offers a set of principles that clinicians, social workers and policy-makers can utilise in their respective spheres of influence.


Clinicians and paediatricians in neurodisability, service providers in neurodisability, community-based health professionals,  and health policy makers.

Full Book Review

Read the full book review by Al Aynsley-Green published in Developmental Medicine and Child Neurology.

Video About the Book

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