Literature DB >> 22851643

Case study: ethical guidance for pediatric e-health research using examples from pain research with adolescents.

Ellen M Henderson1, Emily F Law, Tonya M Palermo, Christopher Eccleston.   

Abstract

OBJECTIVE: The Internet is a frequently used platform for research in pediatric and health psychology. However, there is little pragmatic guidance as to ethical best practice of this research. The absence of guidance is particularly prominent for online research with children. Our objective is to outline ethical issues in e-health research with children and adolescents using two exemplar studies in pediatric pain research.
METHODS: The first study is an asynchronous message board discussion amongst teenagers with pain who are frequent internet users.The second study is a web-based behavioral intervention for the management of adolescent pain.
RESULTS: Each exemplar study is discussed in the context of specific ethical considerations related to recruitment, informed consent and debriefing, privacy and confidentiality, and participant safety. Ethical issues regarding the evaluation of online psychological interventions are also discussed.
CONCLUSIONS: Guidance on optimal ethical practice in e-health research is summarized.

Entities:  

Mesh:

Year:  2012        PMID: 22851643      PMCID: PMC3529561          DOI: 10.1093/jpepsy/jss085

Source DB:  PubMed          Journal:  J Pediatr Psychol        ISSN: 0146-8693


  15 in total

1.  Ethical regulations and their impact on research practice.

Authors:  John G Adair; Terrance W Dushenko; RCL Lindsay
Journal:  Am Psychol       Date:  1985-01

2.  Psychological research online: report of Board of Scientific Affairs' Advisory Group on the Conduct of Research on the Internet.

Authors:  Robert Kraut; Judith Olson; Mahzarin Banaji; Amy Bruckman; Jeffrey Cohen; Mick Couper
Journal:  Am Psychol       Date:  2004 Feb-Mar

3.  Internet sites offering adolescents help with headache, abdominal pain, and dysmenorrhoea: a description of content, quality, and peer interactions.

Authors:  Ellen M Henderson; Benjamin A Rosser; Edmund Keogh; Christopher Eccleston
Journal:  J Pediatr Psychol       Date:  2011-12-12

4.  Doing synchronous online focus groups with young people: methodological reflections.

Authors:  Fiona E Fox; Marianne Morris; Nichola Rumsey
Journal:  Qual Health Res       Date:  2007-04

5.  A systematic review of internet-based self-management interventions for youth with health conditions.

Authors:  Jennifer Stinson; Rita Wilson; Navreet Gill; Janet Yamada; Jessica Holt
Journal:  J Pediatr Psychol       Date:  2008-11-23

6.  The economic impact of chronic pain in adolescence: methodological considerations and a preliminary costs-of-illness study.

Authors:  Michelle Sleed; Christopher Eccleston; Jennifer Beecham; Martin Knapp; Abbie Jordan
Journal:  Pain       Date:  2005-11-16       Impact factor: 6.961

7.  Health Web sites for teens.

Authors:  Jennifer P D'Auria
Journal:  J Pediatr Health Care       Date:  2011 Mar-Apr       Impact factor: 1.812

8.  Disability in adolescents with chronic pain: Patterns and predictors across different domains of functioning.

Authors:  Jeremy Gauntlett-Gilbert; Christopher Eccleston
Journal:  Pain       Date:  2007-01-30       Impact factor: 6.961

9.  Randomized controlled trial of an Internet-delivered family cognitive-behavioral therapy intervention for children and adolescents with chronic pain.

Authors:  Tonya M Palermo; Anna C Wilson; Meaghan Peters; Amy Lewandowski; Hannah Somhegyi
Journal:  Pain       Date:  2009-08-19       Impact factor: 6.961

10.  Self-reported differences in empowerment between lurkers and posters in online patient support groups.

Authors:  Cornelia F van Uden-Kraan; Constance H C Drossaert; Erik Taal; Erwin R Seydel; Mart A F J van de Laar
Journal:  J Med Internet Res       Date:  2008-06-30       Impact factor: 5.428

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  6 in total

1.  Commentary: pediatric eHealth interventions: common challenges during development, implementation, and dissemination.

Authors:  Yelena P Wu; Ric G Steele; Mark A Connelly; Tonya M Palermo; Lee M Ritterband
Journal:  J Pediatr Psychol       Date:  2014-05-10

2.  Bringing psychosocial support to headache sufferers using information and communication technology: lessons learned from asking potential users what they want.

Authors:  Anna Huguet; Jennifer Stinson; Bonnie Mackay; Carolyn Watters; Michelle Tougas; Meghan White; Patrick J McGrath
Journal:  Pain Res Manag       Date:  2014 Jan-Feb       Impact factor: 3.037

3.  The Integration of Technology into Treatment Programs to Aid in the Reduction of Chronic Pain.

Authors:  Chad Eckard; Caitlyn Asbury; Brandon Bolduc; Chelsea Camerlengo; Julia Gotthardt; Lauren Healy; Laura Waialae; Ceirra Zeigler; Jennifer Childers; Joseph Horzempa
Journal:  J Pain Manag Med       Date:  2016-12-31

Review 4.  Ethical issues in using the internet to engage participants in family and child research: A scoping review.

Authors:  Stacey Hokke; Naomi J Hackworth; Nina Quin; Shannon K Bennetts; Hnin Yee Win; Jan M Nicholson; Lawrie Zion; Jayne Lucke; Patrick Keyzer; Sharinne B Crawford
Journal:  PLoS One       Date:  2018-09-27       Impact factor: 3.240

5.  Core components and strategies for suicide and risk management protocols in mental health research: a scoping review.

Authors:  Katye Stevens; Vivetha Thambinathan; Elisa Hollenberg; Fiona Inglis; Andrew Johnson; Andrea Levinson; Soha Salman; Leah Cardinale; Brian Lo; Jenny Shi; David Wiljer; Daphne J Korczak; Kristin Cleverley
Journal:  BMC Psychiatry       Date:  2021-01-07       Impact factor: 3.630

Review 6.  Framework and Practical Guidance for the Ethical Use of Electronic Methods for Communication With Participants in Medical Research.

Authors:  Atsushi Kogetsu; Kazuto Kato
Journal:  J Med Internet Res       Date:  2022-04-20       Impact factor: 7.076

  6 in total

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