The interrelated process of becoming independent in user participation for young persons living with disabilities

References

• Beresford P. A participatory approach to services and support. In: Eide AH, Josephsson S, Vik K, editors. Participation in health and welfare services. Abingdon: Routledge; 2017. P. 66–78.
   Google Scholar
• Birnbaum F, Lewis D, Rosen R, et al. Patient engagement and the design of digital health. Acad Emerg Med. 2015;22(6):754–756.
   PubMed Web of Science ®Google Scholar
• Imms C, Adair B, Keen D, et al. ‘Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities. Dev Med Child Neurol. 2016;58(1):29–38.
   PubMed Web of Science ®Google Scholar
• Imms C, Granlund M, Wilson PH, et al. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability developmental medicine and child neurology. Dev Med Child Neurol. 2017;59(1):16–25.
   PubMed Web of Science ®Google Scholar
• Stewart D, Law M, Young NL, et al. Complexities during transitions to adulthood for youth with disabilities: person-environment interactions. Disabil Rehabil. 2014;36(23).
   PubMed Web of Science ®Google Scholar
• Bekken W, Ytterhus B, Söderström S. In the next moment I answer, it is not possible. ‘professionals’ experiences from transition planning for young people. Scand J Disabil Res. 2021;23(1):338–347.
   Web of Science ®Google Scholar
• Eide AH, Josephsson S, Vik K, et al. Introduction and rationale. In: Eide AH, Josephsson S, editors. Participation in health and welfare services. Abingdon: Routledge; 2017. p. 1–19.
   Google Scholar
• Söderström S, Hemmingsson H. Digitalised communication and social identity. In: Eide AH, Josephsson S, Vik K, editors. Participation in health and welfare services professional concepts and lived experience. London: Routledge; 2017.
   Google Scholar
• Angel S, Frederiksen KN. Challenges in achieving patient participation: a review of how patient participation is addressed in empirical studies. Int J Nurs Stud. 2015;52(9):1525–1538.
   PubMed Web of Science ®Google Scholar
• Bröder J, Okan O, Bauer U, et al. Advancing perspectives on health literacy in childhood and youth. Health Promot Int. 2020;35(3):575–585.
   PubMed Web of Science ®Google Scholar
• Seim S, Slettebø T. Collective participation in child protection services: partnership or tokenism? Eur J Soc Work. 2011;14(4):497–512.
   Web of Science ®Google Scholar
• Kvam L, Pedersen H, Witsø AE. Participation at the interface with health and welfare services. In: Eide AH, Josephsson S, Vik K, editors. Participation in health and welfare services. Abingdon: Routledge; 2017. p. 90–101.
   Google Scholar
• McCormack L, Thomas V, Lewis MA, et al. Improving low health literacy and patient engagement: a social ecological approach. Patient Educ Couns. 2017;100(1):8–13.
   PubMed Web of Science ®Google Scholar
• Askheim OP. User involvement discourses in norwegian welfare policy. Tidsskr Velferdsforsk. 2017;20:134–149.
   Google Scholar
• Askheim OP, Christensen K, Fluge S, et al. User participation in the Norwegian welfare context: an analysis of policy discourses. J Soc Policy. 2017;46(3):583–601.
   Web of Science ®Google Scholar
• Guldvik I, Askheim OP. Constructing user participation for disabled people -the Norwegian context. Disabil Soc. 2021;37(9):1397–1416.
   Web of Science ®Google Scholar
• Boniwsky S, Musto A, Suteu KA, et al. Independence: an analysis of a complex and core construct in occupational therapy. Br J Occup Ther. 2012;75(4):188–195.
   Web of Science ®Google Scholar
• Dasher J, Hollingsworth H, Gross J, et al. editors. Environmental determinants of quality of participation in healthcare settings among people with impairments and limitations. Abingdon, Oxon: Routledge; 2017.
   Google Scholar
• Johannessen A-K, Tveiten S, Werner A. User participation in a municipal acute ward in Norway: dilemmas in the interface between policy ideals and work conditions. Scand J Caring Sci. 2018;32(2):815–823.
   PubMed Web of Science ®Google Scholar
• van Staa A, Jedeloo S, van der Stege H. “What we want”: chronically ill adolescents’ preferences and priorities for improving health care. Patient Prefer Adherence. 2011;5:291–305.
   PubMed Web of Science ®Google Scholar
• Rutz S, van de Bovenkamp H, Buitendijk S, et al. Inspectors’ responses to adolescents’ assessment of quality of care: a case study on involving adolescents in inspections. BMC Health Serv Res. 2018;18(1):226.
   PubMedGoogle Scholar
• Bjønnes S, Grønnestad T, Storm M. I’m not a diagnosis: adolescents’ perspectives on user participation and shared decision-making in mental healthcare. Scand J Child Adolesc Psychiatr Psychol. 2020;8:139–148.
   PubMed Web of Science ®Google Scholar
• Persson S, Hagquist C, Michelson D. Young voices in mental health care: exploring children’s and adolescents’ service experiences and preferences. Clin Child Psychol Psychiatry. 2017;22(1):140–151.
   PubMed Web of Science ®Google Scholar
• Skagestad L, Østensjø S, Ulvik OS. Collaborations between young people living with bodily impairments and their multiprofessional teams: the relational dynamics of participation and power. Child Soc. 2020;35(5):633–647.
   Web of Science ®Google Scholar
• Bjønness S, Viksveen P, Johannessen JO, et al. User participation and shared decision-making in adolescent mental healthcare: a qualitative study of healthcare professionals’ perspectives. Child Adolesc Psychiatry Ment Health. 2020;14:2.
   PubMed Web of Science ®Google Scholar
• Jager M, Reijneveld SA, Metselaar J, et al. Discrepancies between adolescents’ attributed relevance and experiences regarding communication are associated with poorer client participation and learning processes in psychosocial care. Patient Educ Couns. 2014;97(3):332–338.
   PubMed Web of Science ®Google Scholar
• Castro EM, Van Regenmortel T, Vanhaecht K, et al. Patient empowerment, patient participation and patient-centeredness in hospital care: a concept analysis based on a literature review. Patient Educ Couns. 2016;99(12):1923–1939.
   PubMed Web of Science ®Google Scholar
• Schulz PJ, Nakamoto K. Health literacy and patient empowerment in health communication: the importance of separating conjoined twins. Patient Educ Couns. 2013;90(1):4–11.
   PubMed Web of Science ®Google Scholar
• Charmaz K. Constructing grounded theory. 2nd ed. London: SAGE Publications Ltd; 2014.
   Google Scholar
• Le C, Finbråten HS, Pettersen KS, et al. Health Literacy in the Norwegian Population. English Summary. In Befolkningens helsekompetanse, del 1. The International Health Literacy Population Survey 2019-2021(HLS19) – et samarbeidsprosjekt med nettverket M-POHL tilknyttet WHO-EHII. The Norwegian Directorate of Health; 2021.
   Google Scholar
• Barello S, Palamenghi L, Graffigna G. The Mediating role of the patient health engagement model on the relationship between patient percieved autonomy supportive healthcare climate and health literacy skills. Int J Environ Res Public Health. 2020;17:1741.
   PubMed Web of Science ®Google Scholar
• Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int. 2000;15(3):259–267.
   Web of Science ®Google Scholar
• Nguyen T, Henderson D, Stewart D, et al. You never transition alone! exploring the experiences of youth with chronic health conditions, parents and health care provides on self-management. Child Care Health Dev. 2016;42(4):464–472.
   PubMed Web of Science ®Google Scholar
• Bekken W. Negotiating embodied knowledge in the transition to adulthood: a social model of human rights. Disabil Soc. 2020;37(2):163–182.
   Web of Science ®Google Scholar
• Fairbrother H, Curtis P, Goyder E. Making health information meaningful: children’s health literacy practices. SSM Popul Health. 2016;2:476–484.
   PubMed Web of Science ®Google Scholar
• Lid IM. Vulnerability and disability: a citizenship perspective. Disabil Soc. 2015;30(10):1554–1567.
   Web of Science ®Google Scholar