Transitions in rehabilitation: Biographical reconstruction, experiential knowledge and professional expertise

The Transition in Rehabilitation project explored rehabilitation processes of individuals suffering from traumatic injuries. Of special interest was the organization and impact of professional support in the rehabilitation process. The project applied a qualitative approach with interviews and observation in hospitals, municipal healthcare, and the Labour and Welfare Service (NAV). User involvement was organized through a panel of people with injury experiences. Below some important findings are presented. Traumatic injuries may involve biographical disruption and a need for reconstruction of the connection between the injured self and the preinjury identity. The interviewed individuals told about reconstructing a biography disrupted by bodily transformations due to fatigue, incontinence, paralysis or amputations. The altered body had affected intimate relationships as well as relationships to the broader environment. Their reconstruction involved learning to live with an injured body and altered brain functioning of which they had no previous experience. The healthcare and NAV professionals approached injured patients and users holistically and developed rehabilitation goals with respect for a person's personal goals in life. They understood the professional practice as user oriented and with user involvement. Nonetheless, legally regulated procedures aimed at strengthening the users' position were not actively supported. Healthcare professionals found user involvement in direct, individual professional-user relationships to be more authentic. The professionals supported the injured patients and users by teaching what is normal after such injuries, by motivating the injured to see opportunities, and by interventions aimed at helping the injured to recover and manage life after injury. Although the professionals belonged to different types of services, they had a similar approach to the injured service users and a shared understanding of their own and each other's role in a rehabilitation process. Comprehensive and timely information transfers, joint meetings and videoconferences, and electronic patient records were considered transitional facilitators essential for seamless patient transitions between services. While structured information transfer was required, contextualization of information for local use and adaption to local service offers were also important to local professionals. Hence, to the specialised healthcare services, a user orientation must not only involve their own approach to the patients, but also involve supporting frontline services to meet service-users' needs based on the resources at their disposal. All interviewed individuals were in working age, and their rehabilitation involved the question of returning to work. In general, the NAV sought to enhance the collaboration with the general practitioners (GPs) and inform them about the range of opportunities that NAV could provide in return-to-work processes. Through this, they aimed at transforming GPs to think about activation policies in more positive ways. Both healthcare and NAV professionals considered rehabilitation trajectories after traumatic injuries to be of long duration. They expected of the injured individuals that they should work on their rehabilitation and prioritise to get well. Healthcare professionals saw a too early return-to-work as a danger to the recovery process. They conveyed this opinion the NAV counsellors who for their part considered their injured users well taken care of in the healthcare services and postponed work-related follow-up. In the municipal rehabilitation services, little attention was given to employment. The result was that injured individuals, who strongly wanted to return to work, had to handle the relationship to their employers and workplaces on their own. Some had supportive managers and co-workers, others told about scepticism. A literature review indicates that return-to-work interventions for traumatic brain injuries are missing, especially interventions taking place at the workplaces. Patient involvement in health research has gained widespread attention and implementation in the last 10 to 15 years. The project Transition in Rehabilitation is an example. User involvement in this project demonstrates that consultation models, such as a user panel, can be empowering to participating users, on the condition that they are given opportunities to exert influence on the research. The users bring to the research their personal experience, knowledge of other users' experiences and organizations of users, but also their educational and professional background and broader societal engagement.

For seniorforskere, stipendiater og brukerrepresentanter har prosjektet gitt lærerike erfaring om tverrfaglig forskning og brukermedvirkning i forskningsprosessen. Både brukere og forskere tar kunnskap og praktiske erfaringer med inn i senere forsknings- og medvirkningsprosesser. To unge forskere har fått doktorgrad, lagt grunnlaget for videre karriere, og styrket forskningsmiljøet om rehabilitering, tjenestekoordinering og brukermedvirkning. Et dansk-norsk forskernettverk videreføres og mobiliseres for senere prosjektsamarbeid. Ny kunnskap om tjenesteintegrasjon, rehabilitering, arbeidsinkludering og brukermedvirkning er formidlet inn i internasjonale forskningsdiskusjoner og tatt inn i undervisning, forskningsformidling og egen praksis. Det skjer gjennom Kompetansesenter for arbeidsinkludering, kjerneforskningsmiljøet INTEGRATE, rehabiliteringstjenester i spesialisthelsetjenesten, fastlegepraksis, PhD- og masterutdanninger, og en monografi om rehabilitering.

Patients and professionals perceive the rehabilitation process differently. Rather than as participation in a rehabilitation programme, the patients perceive their recovery as a learning process that enables them to master life in the "biographical disrup tion" and "loss of self" caused by traumatic injuries. We term their process of recovery as "biographical reconstruction". For the role of professional expertise in the rehabilitation process, the implications of the patients' biographical reconstruction are hitherto not sufficiently understood. The project explores the processes of biographical changes and the impact of the professional rehabilitation interventions and support in these processes. The chosen group to study consists of people experiencing traumatic brain injury and multi-trauma. Through a qualitative approach containing a) interviews with patients participating in rehabilitation programmes in specialized health services when they are discharged from hospital and a year thereafter, b) obs ervation of interprofessional teams at the specialized rehabilitation units and subsequent interviews with team members, and c) focus group interviews at local health and welfare services, the project will extend the sparse research that have combined int erviews with patients with studies of the system. User involvement is organized through a panel of people with injury experiences, who will monitor the research project and participate in discussions about the approach, the procedures of data collection, and the findings. In Danish-Norwegian collaborative workshops, the project will compare its findings with the results of studies of similar services and rehabilitation processes in Denmark, known for high quality rehabilitation services to TBI patients. These comparisons will enable the project to shed light on shortcomings and gains of the Norwegian system of rehabilitation.