Annika Lindahl Norberg*, Psychosocial Oncology and Supportive Care, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden Helena Grönqvist*, Psychosocial Oncology and Supportive Care, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden Louise von Essen*, Psychosocial Oncology and Supportive Care, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden Track: Research Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Poster presentation Submission Type: Single Presentation Last modified: 2013-09-25

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Background: Public involvement in psychosocial research can be an effective way of improving the practicalities and acceptability of the research including interventions for target end users and thus enhance research’s quality and relevance.
Objective: The purpose was to engage adolescents, some with and some without lived experience of cancer in psychosocial research activities including the design of an online psychological intervention for adolescents with cancer.
Methods: Ten adolescents (4 boys) some with (n=4) and some without (n=6) lived experience of cancer were recruited via a local hospital and local schools. Their age ranged from 13-19 yrs of age. Real-life discussion meetings were held regularly, and for each meeting participants prepared themselves.
Results: The process of involving adolescents in our group’s research activities, the topics discussed during meetings, as well as the outcome of these discussions will be presented. The adolescents’ involvement had an impact on e.g. recruitment strategies to a randomized controlled intervention study; strategies to contact adolescents throughout the intervention study; the visual design of the website for the online psychological intervention, and the wording of oral and written information and psycho-educational texts.
Conclusions: Public involvement in psychosocial research is feasible, improve the quality of the research, the content and online layout of a psychological intervention, and can empower service users to active and constructive participation. However the needs of researchers have to be balanced with those of service users.