Victoria A Miller1, Richard F Ittenbach2, Diana Harris3, William W Reynolds4, Tom L Beauchamp5, Mary Frances Luce6, Robert M Nelson7. 1. Department of Anesthesiology and Critical Care Medicine, the Children’s Hospital of Philadelphia and University of Pennsylvania School of Medicine (VAM) 2. Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center (RFI) 3. Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania School of Medicine (DH) 4. Richard Stockton College of New Jersey (WWR) 5. Kennedy Institute of Ethics, Georgetown University (TLB) 6. Fuqua School of Business, Duke University (MFL) 7. Office of Pediatric Therapeutics, Office of the Commissioner, Food and Drug Administration (RMN)
Abstract
BACKGROUND: The decision to participate in a research intervention or to undergo medical treatment should be both informed and voluntary. OBJECTIVE: The aim of the present study was to develop an instrument to measure the perceived voluntariness of parents making decisions for their seriously ill children. METHODS: A total of 219 parents completed questionnaires within 10 days of making such a decision at a large, urban tertiary care hospital for children. Parents were presented with an experimental form of the Decision Making Control Instrument (DMCI), a measure of the perception of voluntariness. Data obtained from the 28-item form were analyzed using a combination of both exploratory and confirmatory factor analytic techniques. RESULTS: The 28 items were reduced to 9 items representing 3 oblique dimensions: Self-Control, Absence of Control, and Others' Control. The hypothesis that the 3-factor covariance structure of our model was consistent with that of the data was supported. Internal consistency for the scale as a whole was high (0.83); internal consistency for the subscales ranged from 0.68 to 0.87. DMCI scores were associated with measures of affect, trust, and decision self-efficacy, supporting the construct validity of the new instrument. CONCLUSION: The DMCI is an important new tool that can be used to inform our understanding of the voluntariness of treatment and research decisions in medical settings.
BACKGROUND: The decision to participate in a research intervention or to undergo medical treatment should be both informed and voluntary. OBJECTIVE: The aim of the present study was to develop an instrument to measure the perceived voluntariness of parents making decisions for their seriously ill children. METHODS: A total of 219 parents completed questionnaires within 10 days of making such a decision at a large, urban tertiary care hospital for children. Parents were presented with an experimental form of the Decision Making Control Instrument (DMCI), a measure of the perception of voluntariness. Data obtained from the 28-item form were analyzed using a combination of both exploratory and confirmatory factor analytic techniques. RESULTS: The 28 items were reduced to 9 items representing 3 oblique dimensions: Self-Control, Absence of Control, and Others' Control. The hypothesis that the 3-factor covariance structure of our model was consistent with that of the data was supported. Internal consistency for the scale as a whole was high (0.83); internal consistency for the subscales ranged from 0.68 to 0.87. DMCI scores were associated with measures of affect, trust, and decision self-efficacy, supporting the construct validity of the new instrument. CONCLUSION: The DMCI is an important new tool that can be used to inform our understanding of the voluntariness of treatment and research decisions in medical settings.
Authors: Ruth R Faden; Andrea C Gielen; Nancy Kass; Patricia O'Campo; Jean Anderson; Richard Chaisson; Amy Sheon Journal: AIDS Public Policy J Date: 1994
Authors: Victoria A Miller; Richard F Ittenbach; Diana Harris; William W Reynolds; Tom L Beauchamp; Mary Frances Luce; Robert M Nelson Journal: Med Decis Making Date: 2011-03-14 Impact factor: 2.583
Authors: Victoria A Miller; William W Reynolds; Richard F Ittenbach; Mary Frances Luce; Tom L Beauchamp; Robert M Nelson Journal: J Empir Res Hum Res Ethics Date: 2009-09 Impact factor: 1.742
Authors: Christopher A Harle; Elizabeth H Golembiewski; Kiarash P Rahmanian; Babette Brumback; Janice L Krieger; Kenneth W Goodman; Arch G Mainous; Ray E Moseley Journal: J Am Med Inform Assoc Date: 2019-07-01 Impact factor: 4.497
Authors: Elizabeth H Golembiewski; Arch G Mainous; Kiarash P Rahmanian; Babette Brumback; Benjamin J Rooks; Janice L Krieger; Kenneth W Goodman; Ray E Moseley; Christopher A Harle Journal: Ann Fam Med Date: 2021 Jan-Feb Impact factor: 5.166
Authors: Victoria A Miller; Richard F Ittenbach; Diana Harris; William W Reynolds; Tom L Beauchamp; Mary Frances Luce; Robert M Nelson Journal: Med Decis Making Date: 2011-03-14 Impact factor: 2.583
Authors: Joshua D Lee; Peter D Friedmann; Tamara Y Boney; Randall A Hoskinson; Ryan McDonald; Michael Gordon; Marc Fishman; Donna T Chen; Richard J Bonnie; Timothy W Kinlock; Edward V Nunes; James W Cornish; Charles P O'Brien Journal: Contemp Clin Trials Date: 2015-01-17 Impact factor: 2.226
Authors: Jill P Ginsberg; Yimei Li; Claire A Carlson; Clarisa R Gracia; Wendy L Hobbie; Victoria A Miller; John Mulhall; Margarett Shnorhavorian; Ralph L Brinster; Thomas F Kolon Journal: Pediatr Blood Cancer Date: 2014-04-29 Impact factor: 3.167