Literature DB >> 28638969

Introduction: Childhood and Disability.

Erica K Salter1.   

Abstract

From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child's disability. Because these decisions are almost always made by surrogate decision-makers (parents and caregivers) and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to HEC Forum's special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics' relationship to both pediatric ethics and disability studies and introduces the issue's five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles' authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses (or indifferences) to the disabled child.

Entities:  

Keywords:  Childhood; Disability; Disability paradox; Pediatrics; Quality of life

Mesh:

Year:  2017        PMID: 28638969     DOI: 10.1007/s10730-017-9330-7

Source DB:  PubMed          Journal:  HEC Forum        ISSN: 0956-2737


  15 in total

Review 1.  Disability: an agenda for bioethics.

Authors:  M G Kuczewski
Journal:  Am J Bioeth       Date:  2001       Impact factor: 11.229

2.  Growth attenuation: a diminutive solution to a daunting problem.

Authors:  Jeffrey P Brosco; Chris Feudtner
Journal:  Arch Pediatr Adolesc Med       Date:  2006-10

3.  Attenuating growth in children with profound developmental disability: a new approach to an old dilemma.

Authors:  Daniel F Gunther; Douglas S Diekema
Journal:  Arch Pediatr Adolesc Med       Date:  2006-10

4.  Misimagining the unimaginable: the disability paradox and health care decision making.

Authors:  Peter A Ubel; George Loewenstein; Norbert Schwarz; Dylan Smith
Journal:  Health Psychol       Date:  2005-07       Impact factor: 4.267

5.  The disability paradox: high quality of life against all odds.

Authors:  G L Albrecht; P J Devlieger
Journal:  Soc Sci Med       Date:  1999-04       Impact factor: 4.634

6.  "You Can Carry the Torch Now:" A Qualitative Analysis of Parents' Experiences Caring for a Child with Trisomy 13 or 18.

Authors:  Joshua D Arthur; Divya Gupta
Journal:  HEC Forum       Date:  2017-09

7.  Respecting the Dignity of Children with Disabilities in Clinical Practice.

Authors:  Adam Cureton; Anita Silvers
Journal:  HEC Forum       Date:  2017-09

8.  Resisting the siren call of individualism in pediatric decision-making and the role of relational interests.

Authors:  Erica K Salter
Journal:  J Med Philos       Date:  2013-12-20

9.  The relationship between quality of life and functioning for children with cerebral palsy.

Authors:  A Shelly; E Davis; E Waters; A Mackinnon; D Reddihough; R Boyd; S Reid; H K Graham
Journal:  Dev Med Child Neurol       Date:  2008-01-21       Impact factor: 5.449

10.  The case for conserving disability.

Authors:  Rosemarie Garland-Thomson
Journal:  J Bioeth Inq       Date:  2012-07-18       Impact factor: 1.352

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