Article Text

A youth-centred approach to improving engagement in HIV services: human-centred design methods and outcomes in a research trial in Kisumu County, Kenya
  1. Eliud Omondi Akama1,2,
  2. Laura K Beres3,
  3. Jayne Lewis Kulzer4,
  4. Gladys Ontuga1,
  5. Harriet Adhiambo1,5,
  6. Sarah Bushuru1,
  7. Edwin Nyagesoa1,
  8. Joseph Osoro1,
  9. Isaya Opondo1,
  10. Norton Sang1,
  11. Bertha Oketch1,
  12. James Nyanga1,
  13. Cirilus Ogollah Osongo1,6,
  14. Evelyn Nyandieka1,
  15. Evelyn Ododa1,
  16. Eunice Omondi1,
  17. Felix Ochieng1,
  18. Clinton Owino1,
  19. Thomas Odeny1,7,
  20. Zachary Arochi Kwena1,
  21. Ingrid Eshun-Wilson7,
  22. Maya Petersen8,
  23. Elizabeth A Bukusi1,
  24. Elvin H Geng7,
  25. Lisa L Abuogi9
  1. 1Centre for Microbiology Research (CMR), Kenya Medical Research Institute, Nairobi, Kenya
  2. 2Department of Global Health, University of Washington, Seattle, Washington, USA
  3. 3Department of International Health, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, USA
  4. 4Department of Obstetrics, Gynecology, and Reproductive Sciences, University of California, San Francisco, California, USA
  5. 5Department of Child, Family, and Population Health Nursing, University of Washington, Seattle, Washington, USA
  6. 6Family AIDS Care and Education Services (FACES) Clinic, Kisumu, Kenya
  7. 7Department of Medicine, Washington University School of Medicine, St. Louis, Missouri, USA
  8. 8Biostatistics and Epidemiology, University of California, Berkeley, California, USA
  9. 9Department of Pediatrics, University of Colorado, Denver, Colorado, USA
  1. Correspondence to Dr Laura K Beres; laura.beres{at}jhu.edu

Introduction

Innovative interventions are needed to improve HIV outcomes among adolescents and young adults (AYAs) living with HIV. Engaging AYAs in intervention development could increase effectiveness and youth acceptance, yet research is limited. We applied human-centred design (HCD) to refine adherence-support interventions pretrial and assessed HCD workshop acceptability.

Methods We applied an iterative, four-phased HCD process in Kenya that included: (1) systematic review of extant knowledge, (2) prioritisation of design challenges, (3) a co-creation workshop and (4) translation tables to pair insights with trial intervention adaptations. The co-creation workshop was co-led by youth facilitators employing participatory activities to inform intervention adaptations. Iterative data analysis included rapid thematic analysis of visualised workshop outputs and notes using affinity mapping and dialogue to identify key themes. We conducted a survey to assess workshop acceptability among participants.

Results Twenty-two participants engaged in the 4-day workshop. Co-creation activities yielded recommendations for improving planned interventions (eg, message frequency and content; strategies to engage hard-to-reach participants), critical principles to employ across interventions (eg, personalisation, AYA empowerment) and identification of unanticipated AYA HIV treatment priorities (eg, drug holidays, transition from adolescent to adult services). We revised intervention content, peer navigator training materials and study inclusion criteria in response to findings. The youth-led HCD workshop was highly acceptable to participants.

Conclusions Research employing HCD among youth can improve interventions preimplementation through empathy, youth-led inquiry and real-time problem solving. Peer navigation may be most influential in improving retention when engagement with young people is based on mutual trust, respect, privacy and extends beyond HIV-specific support. Identifying opportunities for personalisation and adaptation within intervention delivery is important for AYAs. Patient engagement interventions that target young people should prioritise improved transition between youth and adult services, youth HIV status disclosure, AYA empowerment and healthcare worker responsiveness in interactions and episodic adherence interruptions.

  • Public Health
  • HIV

Data availability statement

Data are available on reasonable request. In accordance with our NIH-approved data sharing plan, and in order to protect the privacy of the small number of participants who participate in the study, we will limit sharing to insights and translation tables, available upon reasonable request.

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This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Data availability statement

Data are available on reasonable request. In accordance with our NIH-approved data sharing plan, and in order to protect the privacy of the small number of participants who participate in the study, we will limit sharing to insights and translation tables, available upon reasonable request.

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Footnotes

  • Handling editor Valery Ridde

  • EOA and LKB contributed equally.

  • Correction notice This article has been corrected since it published online to include the Competing interests statement.

  • Contributors EOA, LKB, LLA and JLK drafted the manuscript. EHG, LLA, EOA, LKB, JLK, GO, HA, SB, EOdoda, FO, COO, TO, EAB, ZK and IE-W conceptualised and designed the study. EOA, LKB, JLK, GO, HA, SB, EN, JO, IO, NS, BO, JN, COO, EN, EOdoda, EOmondi, FO, COO, TO, ZK, IE-W, MP, EAB, EHG and LLA contributed to implementation of study activities and data analysis. LLA is the study guarantor. All authors read, revised and approved the final manuscript.

  • Funding Funding National Institute or Nursing Research, National Institutes of Health R01NR018801. National Institute of Mental Health 1K01MH130244 and National Institutes of HealthK24 AI134413.

  • Competing interests Dr. Beres’ contribution to this publication was as a consultant to Washington University in St. Louis. This arrangement has been reviewed and approved by the Johns Hopkins University in accordance with its conflict of interest policies.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

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

  • 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.