Mari Holen

Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research “mimes” biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices.

Young people’s mental health recovery is well-explored in empirical research, yet there is a lack of meta-studies synthesizing the characteristics of young people’s recovery. This meta-ethnography explores young adults’ recovery during life-disruptive experiences of early psychosis or schizophrenia. Based on a systematic literature review search, 11 empirical qualitative studies were included for synthesis. Inspired by young people’s prominent experience of social isolation in the included studies, we applied an interpretive lens of belonging deriving from the sociology of youth. The synthesis presents five themes: (1) expectations of progression in youth in contrast with stagnation during psychosis, (2) feeling isolated, lost and left behind, (3) young adults’ recovery involves belonging with other young people, (4) forming identity positions of growth and disability during psychosis, and the summarizing line of argument, (5) navigating relational complexities in the process of recovery. While suffering from social isolation, young people’s recovery is conceived as getting on with life, like any other young person involving connecting and synchronizing life rhythms with their age peers. Socializing primarily with caring adults entails being stuck in the position of a child, while connecting with young people enables the identity positions of young people. This synthesis can inspire support for young people’s recovery through social inclusion in youth environments.