Background With the increase in user activism in the Western societies in recent years, there has also been an increase in promoting user involvement in research. Hence, is necessary to address the danger of tokenism, a false appearance of inclusiveness, in user involvement, as well as to explore methods for promoting active user involvement. Using a Norwegian research project on the rehabilitation processes following traumatic injuries organised via user involvement, this study reviews ways in which to avoid tokenism in user involvement and how to instead stimulate active user engagement in research. Methods The analysis employs an ethnographic approach using participant observations from real life settings involving user involvement during the five years research process. The empirical material includes 472 pages of transcribed audio recordings from meetings between researchers and collaborators discussing personal experiences with traumatic injuries, and 340 pages of documents on the project’s involvement process. This empirical material was examined by thematic analysis, involving processes such as decontextualising, flagging and re-contextualising. Results Two main categories of facilitation emerged as promoting non-tokenistic, active user involvement in research: 1) defining the collaborative arena, (i.e. the setting of collaboration) which entails preparing for participation and promoting active involvement, and 2) designing for research counselling, which involves gathering user perspectives and valuing criticism. Taking into account the existing asymmetric relationships between researchers and collaborators, enabling more evenly distributed power dynamics also proved to be essential. Conclusions To achieve active participation that is relevant to the collaborators, two interconnected yet analytically independent themes should be considered: the collaborative arena and counselling. Both prove crucial for curbing power imbalance and stimulating the involvement process. The study indicates that non-tokenistic involvement should be anchored in the respect for participants and their ability to make contributions. This analysis can help researchers who seek active engagement and non-tokenistic involvement in research to find methods for facilitating and organising participation in their fields.
People experiencing traumatic brain injury or multitrauma will often live with problems in functioning for a profound period in life. A situation of great complexity emerges involving both the experience of an impaired body and the experience of a changed social position. This article addresses the intricate relations between the altered body, personal ambitions, and social surroundings in the first 2–3 years after an injury. The conceptual framework centers around the process of change, applying concepts such as the unexpected other and biographical reconstruction. Twenty-one people of working age were interviewed two times. All interviewees had experienced traumatic brain injury or multitrauma. A thematic narrative analysis was applied. Consequences of the injury took place at a carnal level where fatigue is something completely different from becoming exhausted and where elimination of body waste takes place through practices novel to the injured person. Living with impairment also took place at the level of social interaction. Here, family relations, shame, and establishing a new identity seemed profoundly important. This article makes two novel contributions. First, it emphasizes more than previous studies do that the daily management of altered body functions is more important for independence and wellbeing. Second, the article identifies the narrative about the accident as an important issue for injured people to settle.
Background: Cognitive impairment from acquired brain injury can be difficult for those affected. Coping with life may cause anxiety. Psychiatric problems often arise. People often get socially isolated, and the risk of suicide is high. Objective: This study aims to explore how people with cognitive impairments experience their environment and how experiences of crisis make sense in their life. Method: The study was based on 16 late-term rehabilitation patients, with mild to moderate brain injuries. Ethnographic methods with 4-months participant observation and 26 in-depth interviews were used. Results: The participants experienced break-down in daily routines. Their security disappeared. They could experience disruptions to the outer world. This could lead to anxiety. The notion "Crisis of presence" describes the experiences. Some people could have suicidal thoughts. A number of participants went on in life by using metaphors to describe and interpret their experiences and to create coherence in life.Conclusion: Mental disorders and depression increases after brain injury. Suicide may occur without these disorders. Brain injuries often lead to cognitive uncontrollable situations with anxiety and crisis, and the patients need to protect from the crisis. Being aware of this, professionals may discover or prevent suicide-risk not otherwise identified.
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