Literature DB >> 30385619

Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making.

Chris Feudtner1, Theodore Schall2, Douglas Hill2.   

Abstract

We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision-makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making.
Copyright © 2018 by the American Academy of Pediatrics.

Entities:  

Mesh:

Year:  2018        PMID: 30385619     DOI: 10.1542/peds.2018-0516C

Source DB:  PubMed          Journal:  Pediatrics        ISSN: 0031-4005            Impact factor:   7.124


  8 in total

Review 1.  "Good-Parent Beliefs": Research, Concept, and Clinical Practice.

Authors:  Meaghann S Weaver; Tessie October; Chris Feudtner; Pamela S Hinds
Journal:  Pediatrics       Date:  2020-06       Impact factor: 7.124

2.  Decisions for Long-Term Ventilation for Children. Perspectives of Family Members.

Authors:  Jeffrey D Edwards; Howard B Panitch; Judith E Nelson; Rachel L Miller; Marilyn C Morris
Journal:  Ann Am Thorac Soc       Date:  2020-01

3.  Bereaved Parent Perspectives on the Benefits and Burdens of Technology Assistance among Children with Complex Chronic Conditions.

Authors:  Jori F Bogetz; Anna Revette; Danielle DeCourcey
Journal:  J Palliat Med       Date:  2021-10-07       Impact factor: 2.947

4.  Protecting my injured child: a qualitative study of parents' experience of caring for a child with a displaced distal radius fracture.

Authors:  E E Phelps; E Tutton; M L Costa; J Achten; A Moscrop; D C Perry
Journal:  BMC Pediatr       Date:  2022-05-12       Impact factor: 2.567

Review 5.  Historical Perspectives: Shared Decision Making in the NICU.

Authors:  Anne Sullivan; Christy Cummings
Journal:  Neoreviews       Date:  2020-04

6.  Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families.

Authors:  Jori F Bogetz; Monica E Lemmon
Journal:  J Pain Symptom Manage       Date:  2021-01-22       Impact factor: 5.576

7.  Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child.

Authors:  Marie L Neumann; Meaghann S Weaver; Blyth Lord; Lori Wiener; Pamela S Hinds
Journal:  Palliat Med Rep       Date:  2021-04-27

8.  Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis.

Authors:  Francine Buchanan; Claudia Lai; Eyal Cohen; Golda Milo-Manson; Aviv Shachak
Journal:  J Particip Med       Date:  2022-01-17
  8 in total

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