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Ethically incentivising healthy behaviours: views of parents and adolescents with type 1 diabetes
  1. Seema Shah1,2,
  2. Faisal Malik3,4,
  3. Kristen D Senturia3,
  4. Cara Lind3,
  5. Kristen Chalmers3,
  6. Joyce Yi-Frazier3,4,
  7. Catherine Pihoker3,4,
  8. Davene Wright5
  1. 1Advanced General Pediatrics, Ann and Robert H Lurie Children's Hospital of Chicago, Chicago, Illinois, USA
  2. 2Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, United States
  3. 3Seattle Children's Research Institute, Seattle, Washington, USA
  4. 4Pediatrics, University of Washington, Seattle, Washington, USA
  5. 5Population Medicine, Harvard Medical School & Harvard Pilgrim Health Care Institute, Boston, MA, United States
  1. Correspondence to Professor Seema Shah, Ann and Robert H Lurie Children's Hospital of Chicago, Chicago, IL 60611, USA; Seema.Shah{at}northwestern.edu

Abstract

Background To assess ethical concerns associated with participation in a financial incentive (FI) programme to help adolescents with type 1 diabetes improve diabetes self-management.

Methods Focus groups with 46 adolescents with type 1 diabetes ages 12–17 and 38 of their parents were conducted in the Seattle, Washington metropolitan area. Semistructured focus group guides addressed ethical concerns related to the use of FI to promote change in diabetes self-management. Qualitative data were analysed and emergent themes identified.

Results We identified three themes related to the ethical issues adolescents and parents anticipated with FI programme participation. First, FI programmes may variably change pressure and conflict in different families in ways that are not necessarily problematic. Second, the pressure to share FIs in some families and how FI payments are structured may lead to unfairness in some cases. Third, some adolescents may be likely to fabricate information in any circumstances, not simply because of FIs, but this could compromise the integrity of FI programmes relying on measures that cannot be externally verified.

Conclusions Many adolescents with type 1 diabetes and their parents see positive potential of FIs to help adolescents improve their self-management. However, ethical concerns about unfairness, potentially harmful increases in conflict/pressure and dishonesty should be addressed in the design and evaluation of FI programmes.

  • behaviour modification
  • clinical ethics
  • health economics
  • minors/parental consent
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Footnotes

  • Twitter @SeemaKShah

  • Contributors SS helped conceptualise and design the study, assisted in review and coding of data, drafted the initial manuscript, and reviewed and revised the manuscript. FM and KDS provided input into initial study design, designed the data collection instruments, collected data, carried out the data analyses, and reviewed and provided feedback on drafts of the manuscript for important intellectual content. CL and KC provided input into study design, were instrumental in data collection and reviewed and provided comments on the manuscript. JY-F and CP provided input into initial study design and reviewed the manuscript for important intellectual content. DW helped conceptualise and design the study, coordinated and supervised data collection and management, and critically reviewed the manuscript for important intellectual content. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding All phases of this study were supported by the American Diabetes Association (1-18-ICTS-100).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The Seattle Children’s Research Institute Institutional Review Board approved the study.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon request.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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