User involvement and experiential knowledge in interprofessional rehabilitation: a grounded theory study

BACKGROUND: User involvement is increasingly important in developing relevant health care services. The aim of this study was to contribute to a deeper understanding of user involvement and patients’ experiential knowledge as recognized and incorporated into clinical practice by rehabilitation professionals. METHODS: A qualitative design using a grounded theory approach was applied. Data were collected by observations of the interprofessional meetings at two rehabilitation units treating patients with traumatic brain injury and multiple trauma and by individual semi-structured interviews with rehabilitation professionals. RESULTS: The professionals recognized and incorporated user involvement into clinical practice as formal or authentic. Formal user involvement was sometimes considered pro forma. Incorporating patient’ experiential knowledge was considered a part of authentic user involvement. Possible gaps between the patients’ experiential knowledge and professional expertise were recognized. Challenges included dealing with ‘artifacts’, sources of information external to the patients’ own experiences, and addressing the patients’ possibly reduced insight due to trauma. CONCLUSION: Patients’ experiential knowledge was recognized as an essential component of the professionals’ knowledge base. The professionals considered user involvement and patients’ experiential knowledge as part of their clinical practice. Implementation of user involvement and contribution of patients’ experiential knowledge could be improved by understanding the issues raised in practice, such as possible negative consequences of user involvement in form of burdening or disempowering the patients. A better understanding of the characteristics and measures of user involvement is necessary in order to be able to offer its full benefits for both the patients and the professionals. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-016-1808-5) contains supplementary material, which is available to authorized users.