Ethics in Child Health – Chapter 17: Service provision for hard-to-reach families (ebook)
This chapter is part of Ethics in Child Health
Principles and Cases in Neurodisability
Product Type: PDF (Sub-Section of Book)
Series: Mac Keith Press
Edition: 1st
Publication date: September 2016
Page count: 10
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Chapter 17 of the book – Service provision for hard-to-reach families: what are our responsibilities?
Ethical challenges can emerge when clinical policies within an agency with decision-making responsibility – such as a community-based facility or government-run program – appear to conflict with the best intentions of the front-line service providers. Phoenix addresses these issues in a compelling story of the conflict created for her and her colleagues when a standard policy about families’ missed appointments came up against the clinicians’ awareness of and sensitivity to the stresses on a family that accounted for this apparent delinquency. The clinicians were caught in a dilemma that led to a no-win situation – at least for the immediate issue – and caused discomfort for most of the players.
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.
- From the complete book:
- Foreword
- Introduction
- SECTION A: SETTING THE STAGE: ATTUNING MORAL AND ETHICAL THINKING
- Chapter 1. A Parent’s Perspective on Everyday Ethics. Jennifer Johannesen
- Chapter 2 Present-Day Health and Neurodevelopmental Disability. Peter L Rosenbaum and Gabriel M Ronen with BJ Cunningham
- Chapter 3 Can moral problems of everyday clinical practice ever be resolved? A proposal for integrative pragmatist approaches. Eric Racine
- SECTION B
- EARLY DAYS, THE START OF THE DIFFERENT DEVELOPMENTAL JOURNEY
- Chapter 4 Prenatal Consultation: Ethical Challenges and Proposed Solutions. Jennifer Cobelli Kett, Hannah M. Tully, and Daniel A. Doherty
- Chapter 5 Evidence-based neonatal neurology: Decision-making in conditions of medical uncertainty. Isabelle Chouinard, Eric Racine, Pia Wintermark
- Chapter 6 “Best Interest” Decision Making: The Importance of Beliefs and Relationships in the Process. Howard Needelman and David Sweeney
- Chapter 7 Humanism in the Practice of Neurodevelopmental Disability. Garey Noritz.
- Chapter 8 Truth with hope: Ethical challenges in disclosing ‘bad’ diagnostic, prognostic and intervention information. Iona Novak, Marelle Thornton, Cathy Morgan, Petra Karlsson, Hayley Smithers-Sheedy, Nadia Badawi
- SECTION C
- ETHICAL ISSUES IN ADDRESSING FAMILIES’ PRIORITIES
- Chapter 9 Different perspectives, different priorities: Clinician, patient and family finding a path ahead together. Dinah Susan Reddihough and Jane Tracy
- Chapter 10. The Importance of Patients’ and Families’ Narratives: Developing a Philosophy of Care to Support Patient/Family Goals. Jean C. Kunz Stansbury and Scott Schwantes
- Chapter 11. The ethics of patient advocacy: Bending the Rules on Behalf of Patients. Raymond Tervo and Paul J. Wojda
- Chapter 12. Responding to requests for novel/unproven alternative and complementary treatments. Edward Albert Hurvitz and Garey Noritz
- Chapter 13. A Miracle Cure for Neurological Impairment: Balancing Hype and Hope for Parents and Patients. Paul C. Mann, Russell P. Saneto and Sidney M. Gospe, Jr
- SECTION D RESPECTING SOCIAL AND CULTURAL VALUES
- Chapter 14. Terminology in neurodevelopmental disability: Is using stigmatizing language harmful? Lisa Samson-Fang
- Chapter 15. Everyday Ethics in Rwanda: Perspectives on hope, fatigue, death and regrowth. Emily Esmaili and Christian Ntizimira
- Chapter 16. When Expectations Diverge: Addressing our Cultural Differences Differently. Laura S. Funkhouser (with Suzanne Linett)
- Chapter 17. Service provision for hard-to-reach families: What are our responsibilities? Michelle Phoenix
- Chapter 18. The Obligation to Report Child Abuse/Neglect is More Complex Than It Seems. Lucyna M Lach and Rachel Birnbaum
- Chapter 19. The Dilemmas for Siblings of Children with Disabilities: Personal Reflections on Ethical Challenges. Peter Blasco
- Chapter 20. Paying attention to parental mental health: Is this our responsibility? Dinah Susan Reddihough and Elise Davis
- SECTION E THERAPIES, REHABILITATION AND INTERVENTIONS
- Chapter 21. Tensions regarding the processes associated with decision-making about intervention. Lora Woo, Eunice Shen and Elizabeth Russel
- Chapter 22. “Can’t You Just Do Therapy?” When there is Disagreement About Discharge From Therapy. Janey McGeary Farber, and Harriet Fain-Tvedt
- Chapter 23. Concurrent therapy treatment in pediatric rehabilitation. Marilyn Wright, Sandra Gaik and Kathleen Dekker
- Chapter 24. Ethical Considerations regarding Surgical Treatment of Severe Scoliosis in Children with Cerebral Palsy. M. Wade Shrader
- SECTION F ETHICAL ISSUES IN SPECIFIC CONDITIONS AND CONTEXTS
- Chapter 25. Considering Best Interest, Quality of Life, Autonomy and Personhood in the ICU. Michael A Clarke
- Chapter 26. How much is too much care? Interventions and life support in profoundly impaired children with life-threatening conditions. Christopher Newman and Eric B Zurbrugg
- Chapter 27. Discussing Sudden Unexpected Death In Newly Diagnosed Epilepsy. James Reese, Jr, Philip Pearl.
- Chapter 28. Ethical challenges of diagnosing FASD: When diagnosis is ‘socio-political’. Ilona Autti-Rämö
- SECTION G EMERGING INDEPENDENCE AND PREPARING FOR ADULTHOOD
- Chapter 29. Growth and pubertal manipulation in young people with neurodisabilities: What are the ethical implications? Constantine Samaan
- Chapter 30. Ethical Challenges in providing transitional care for young people with a developmental disability Jan Willem Gorter and Barbara Gibson
- Chapter 31 Conservatorship in Emerging Adults: Ethical and Legal Considerations. Henry G. Chambers
- Epilogue
- Looking Back to the Future. Bernard Dan
A free sample from the book is available here to download:
Click here to see two of the Editors, Peter Rosenbaum and Bernard Dan, discussing the development of the book, and what they hope to achieve with its publication.
- Ethics in Child Health - Chapter 3: Can moral problems of everyday clinical practice ever be resolved? (ebook)
- Ethics in Child Health - Chapter 2: Present-day health and neurodevelopmental disability (ebook)
- Ethics in Child Health - Chapter 31: Conservatorship in emerging adults (ebook)
- Ethics in Child Health - Chapter 30: Independence in adulthood (ebook)
- Ethics in Child Health - Chapter 29: Growth and pubertal manipulation in children with neurodisabilities (ebook)
- Ethics in Child Health - Chapter 28: Ethical challenges of diagnosing fetal alcohol spectrum disorder (ebook)
- Ethics in Child Health - Chapter 27: Discussing sudden unexpected death in newly diagnosed epilepsy (ebook)
- Ethics in Child Health - Chapter 26: How much is too much care? (ebook)
- Ethics in Child Health - Chapter 25: Considering best interest, quality of life, autonomy and personhood in the intensive care unit (ebook)
- Ethics in Child Health - Chapter 24: Ethical considerations regarding surgical treatment of severe scoliosis in children with cerebral palsy (ebook)
- Ethics in Child Health - Chapter 23: Concurrent therapy in pediatric neurorehabilitation (ebook)
- Ethics in Child Health - Chapter 22: Can’t you just do therapy? (ebook)
- Ethics in Child Health - Chapter 21: Tensions regarding the processes associated with decision-making (ebook)
- Ethics in Child Health - Chapter 20: Paying attention to parental mental health (ebook)
- Ethics in Child Health - Chapter 19: The dilemmas for siblings of children with disabilities (ebook)
- Ethics in Child Health - Chapter 18: The obligation to report child abuse/neglect is more complex than it seems (ebook)
- Ethics in Child Health - Chapter 17: Service provision for hard-to-reach families (ebook)
- Ethics in Child Health - Chapter 15: Everyday ethics in Rwanda (ebook)
- Ethics in Child Health - Chapter 14: Terminology in neurodevelopmental disability (ebook)
- Ethics in Child Health - Chapter 13: A miracle cure for neurological disability (ebook)
- Ethics in Child Health - Chapter 12: Responding to requests for novel/unproven alternative and complementary treatments (ebook)
- Ethics in Child Health - Chapter 11: The ethics of patient advocacy (ebook)
- Ethics in Child Health - Chapter 10: The importance of patients’ and families’ narratives (ebook)
- Ethics in Child Health - Chapter 9: Different perspectives, different priorities (ebook)
- Ethics in Child Health - Chapter 8: Truth with hope (ebook)
- Ethics in Child Health - Chapter 7: Humanism in the practice of neurodevelopmental disability (ebook)
- Ethics in Child Health - Chapter 6: The importance of beliefs and relationships in the decision-making (ebook)
- Ethics in Child Health - (Chapter 5) - Evidence-based neonatal neurology (ebook)
- Ethics in Child Health - Chapter 4: Prenatal consultation (ebook)
- Ethics in Child Health - Chapter 1: A parent’s perspective on everyday ethics (free ebook)
- Ethics in Child Health - Chapter 16: When expectations diverge (ebook)