Ethics in Child Health – Chapter 10: The importance of patients’ and families’ narratives (ebook)


Chapter 10 of the book – The importance of patients’ and families’ narratives: developing a philosophy of care to support patient/family goals

This chapter explores the intersection of medical capability and families’ personal narratives. The authors remind us of the essential responsibility to understand the perspectives and stories of the patients and their families. They present, analyse and follow the story of a 15-year-old girl with cerebral palsy and her widowed mother across time and crises, outlining how the many people in this young woman’s life worked together in this complex situation, and considered the potential benefits and costs of various courses of action. By applying a systematic process of case analysis and reflective practice the care team – including the family and their support – reached what appears to have been an appropriate decision for all concerned.

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.


Readership: clinicians and paediatricians in neurodisability, service providers in neurodisability, community-based health professionals,  and health policy makers.

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