Youth participation in healthcare

The overall aim of the project is to study, develop and evaluate the implementation of support for children's participation in care processes.

Several sub-projects and doctoral projects are included with a focus on children's participation in various activities in pediatric health care, habilitation, school and care:

  • To strengthen children's participation in their care through the development and validation of digital interactive assessment and communication tools
  • To strengthen children's participation in their care through the implementation of assessment and communication tools
  • To measure children's self-rated experience of their participation in care, school and care
  • To investigate norm structures that influence the view of children's participation and to intervene to promote children's participation by shifting norms


About the project

Project period:

  • 2013–2024


  • Barncancerfonden
  • Norrbacka-Eugeniastiftelsen
  • Region Halland
  • Reumatikerfonden
  • Region Skåne
  • Södra sjukvårdsregionen FoU
  • Vetenskapsrådet
  • Stig Thunes fond
  • Svensk Sjuksköterskeförening

Collaboration partners:

  • Region Halland Hallands sjukhus
  • Barnkliniken Hallands sjukhus Halmstad
  • Region Skåne
  • Kuratorenheten vid Karolinska Institutet Stockholm
  • Galaco AB

Project leader:

Other participating researchers:

  • Britta Teleman
  • Caroline Karlsson
  • Elin Vinblad
  • Susann Arvidsson
  • Ing-Marie Carlsson
  • Ingrid Larsson
  • Britt-Mari Gilljam
  • Carina Sjöberg


  1. Child participation in health care (ChiPaC)—Development and psychometric evaluation of a self‐report instrument for children's participation in health care. Gilljam B-M., Arvidsson S., Nygren J.M., Svedberg P. Journal of Clinical Nursing. DOI: 10.1111/jocn.15063
  2. Parents’ experiences of an e-health intervention implemented in pediatric healthcare: a qualitative study. Larsson I., Svedberg P., Arvidsson S., Nygren J.M., and Carlsson IM. BMC Health Services Research. 2019.änk till annan webbplats.
  3. Barriers and enablers for successful implementation of the eHealth solution Sisom for child participation in paediatric care - a multi-centre study. Svedberg P., Arvidsson S., Larsson I., Carlsson I-M. Nygren J.M. Journal of Medical Internet Research. 2019.
  4. Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study. Vinblad E., Larsson I., Lönn M., Olsson E., Nygren J.M., Svedberg P. JMIR Formative Research. DOI: 10.2196/preprints.14493
  5. Children and young people's participation in developing interventions in health and well-being: A scoping review. Larsson I, Staland-Nyman C, Svedberg P, Nygren J, Carlsson IM. BMC Health Serv Res. 2018 28;18(1):507
  6. Patient participation, a prerequisite for care: A grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context. Svedberg P., Nygren JM., Carlsson I-M. Nursing Open 2018 5(1):45-52.
  7. Involving Children With Cancer in Health Promotive Research: A Case Study Describing Why, What, and How.Nygren, JM., Lindberg, S., Wärnestål, P., and Svedberg, P. JMIR Res Protoc 2017;6(2):e19.
  8. Evaluating Digital Peer Support for Children Cured from Cancer. Lindberg S, Svedberg P, Bergquist M, Nygren JM. Int J Human-Computer Interaction. 2017 33(8):664-676
  9. Participation in paediatric perioperative care: ‘what it means for Parents. Sjöberg, C., Svedberg, P., Nygren JM., and Carlsson I.M. J Clin Nurs doi: 10.1111/jocn.13747
  10. Redesign and validation of Sisom, an interactive assessment and communication tool for children with cancer. Arvidsson S, Gilljam BM, Nygren JM, Ruland CM, Nordby-Bøe T, Svedberg T. JMIR Mhealth Uhealth 2016;4(2):e76.
  11. Promoting participation in healthcare situations for children with JIA; a grounded theory study. Gilljam BM, Arvidsson S, Nygren JM, Svedberg P. Int J Qualitative Stud Health Well-being 2016, 11: 30518.
  12. The perspective of children on factors influencing their participation in perioperative care. Sjöberg C, Amhliden H, Nygren JM, Arvidsson S, Svedberg P. J Clin Nurs. 2015. 24(19-20):2945-53.