Literature DB >> 35930415

Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait.

Anne O Oguntoye1, Nyema T Eades, Dalal Aldossary, Grace Kuenzli, Gina Gehling, Miriam O Ezenwa, Versie Johnson-Mallard, Yingwei Yao, Agatha M Gallo, Diana J Wilkie.   

Abstract

Our study purpose was to evaluate the variation and accuracy of tailored parenting plans individually generated as a supplement to reproductive health education on the genetic inheritance of sickle cell disease or sickle cell trait. We present a secondary data analysis of experimental group data from a randomized controlled trial. Participants completed the valid and reliable Internet-based Sickle Cell Reproductive Health Knowledge Parenting Intent Questionnaire. We created a computerized algorithm that used participants' responses to generate tailored parenting plans based on their parenting preferences and partner's sickle cell status. Thirty-one different parenting plans were generated to meet the variety in the participants' preferences. The most frequently generated plan was for participants with sickle cell disease who had a partner with hemoglobin AA, who wanted to be a parent, was not likely to be pregnant, and wanted their child to be sickle cell disease free. More than half of the participants required alteration in their reproductive behavior to achieve their parenting goals. Findings provide insight into the variety and accuracy of computer algorithm-generated parenting plans, which could further guide refinement of the algorithm to produce patient-centered, tailored parenting plans supplemental to Internet-based genetic inheritance education.
Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.

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Year:  2022        PMID: 35930415      PMCID: PMC9464668          DOI: 10.1097/CIN.0000000000000933

Source DB:  PubMed          Journal:  Comput Inform Nurs        ISSN: 1538-2931            Impact factor:   2.146


  16 in total

1.  Sickle cell carriers' unmet information needs: Beyond knowing trait status.

Authors:  Tilicia L Mayo-Gamble; David Schlundt; Jennifer Cunningham-Erves; Velma McBride Murry; Kemberlee Bonnet; Delores Quasie-Woode; Charles P Mouton
Journal:  J Genet Couns       Date:  2019-04-10       Impact factor: 2.537

2.  Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects.

Authors:  Diana J Wilkie; Agatha M Gallo; Yingwei Yao; Robert E Molokie; Christine Stahl; Patricia E Hershberger; Zhongsheng Zhao; Marie L Suarez; Robert J Labotka; Bonnye Johnson; Rigo Angulo; Veronica Angulo; Jesus Carrasco; David Shuey; Stephanie Pelligra; Edward Wang; Dennie T Rogers; Alexis A Thompson
Journal:  Nurs Res       Date:  2013 Sep-Oct       Impact factor: 2.381

3.  Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.

Authors:  Agatha M Gallo; Diana J Wilkie; Yingwei Yao; Robert E Molokie; Christiane Stahl; Patricia E Hershberger; Zhongsheng Zhao; Marie L Suarez; Bonnye Johnson; Rigoberto Angulo; Jesus Carrasco; Veronica Angulo; Alexis A Thompson
Journal:  J Genet Couns       Date:  2015-08-28       Impact factor: 2.537

Review 4.  Hematopoietic stem cell transplantation for sickle cell disease: Progress and challenges.

Authors:  Monica L Hulbert; Shalini Shenoy
Journal:  Pediatr Blood Cancer       Date:  2018-05-24       Impact factor: 3.167

Review 5.  Sickle cell disease.

Authors:  Russell E Ware; Mariane de Montalembert; Léon Tshilolo; Miguel R Abboud
Journal:  Lancet       Date:  2017-02-01       Impact factor: 79.321

6.  Reproductive intentions in mothers of young children with sickle cell disease.

Authors:  Corinna L Schultz; Trudy Tchume-Johnson; Tannoa Jackson; Henrietta Enninful-Eghan; Marilyn M Schapira; Kim Smith-Whitley
Journal:  Pediatr Blood Cancer       Date:  2020-02-17       Impact factor: 3.167

7.  Genetic education and sickle cell disease: feasibility and efficacy of a program tailored to adolescents.

Authors:  Jerlym S Porter; Christy S Matthews; Yvonne M Carroll; Sheila M Anderson; Matthew P Smeltzer; Jane S Hankins
Journal:  J Pediatr Hematol Oncol       Date:  2014-10       Impact factor: 1.289

Review 8.  Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members.

Authors:  Barbara P Yawn; George R Buchanan; Araba N Afenyi-Annan; Samir K Ballas; Kathryn L Hassell; Andra H James; Lanetta Jordan; Sophie M Lanzkron; Richard Lottenberg; William J Savage; Paula J Tanabe; Russell E Ware; M Hassan Murad; Jonathan C Goldsmith; Eduardo Ortiz; Robinson Fulwood; Ann Horton; Joylene John-Sowah
Journal:  JAMA       Date:  2014-09-10       Impact factor: 56.272

9.  Nonmyeloablative Stem Cell Transplantation with Alemtuzumab/Low-Dose Irradiation to Cure and Improve the Quality of Life of Adults with Sickle Cell Disease.

Authors:  Santosh L Saraf; Annie L Oh; Pritesh R Patel; Yash Jalundhwala; Karen Sweiss; Matthew Koshy; Sally Campbell-Lee; Michel Gowhari; Johara Hassan; David Peace; John G Quigley; Irum Khan; Robert E Molokie; Lewis L Hsu; Nadim Mahmud; Dennis J Levinson; A Simon Pickard; Joe G N Garcia; Victor R Gordeuk; Damiano Rondelli
Journal:  Biol Blood Marrow Transplant       Date:  2015-09-05       Impact factor: 5.742

10.  Web-based intervention to improve quality of life in late stage bipolar disorder (ORBIT): randomised controlled trial protocol.

Authors:  Kathryn Fletcher; Fiona Foley; Neil Thomas; Erin Michalak; Lesley Berk; Michael Berk; Steve Bowe; Sue Cotton; Lidia Engel; Sheri L Johnson; Steven Jones; Michael Kyrios; Sara Lapsley; Cathrine Mihalopoulos; Tania Perich; Greg Murray
Journal:  BMC Psychiatry       Date:  2018-07-13       Impact factor: 3.630

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  1 in total

1.  Identifying Gingival Pigmentation Patterns and Skin Color and Its Co-relation With Serum Ferritin Levels in Thalassemic Patients.

Authors:  Shreya Gajjar; Harjot Kaur; Gaurav Girdhar; Ashish Kaur; Chandni Patel; Rupal Mehta; Sushmita Bhakkand; Tanvi Hirani; Surabhi Joshi; Mohammed Irfan; Wan Farizatul Shima Binti Wan Ahmad Fakuradzi; Susmita Sinha; Mainul Haque; Santosh Kumar
Journal:  Cureus       Date:  2022-08-14
  1 in total

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