Experiences Of Patient Participation Research Articles

Patient-professional partnership in spinal cord injury rehabilitation.

There has been considerable pressure from both patients and professionals for greater patient involvement in the delivery of health services in recent years, particularly in the domain of rehabilitation. However, it has been suggested that involvement by patients is limited to rehabilitation. Accordingly, this study aimed to explore and describe patients' and professionals' experiences of patient participation in team decision-making processes. This article presents findings from a larger ethnographic study, which employed interviews and participant observation to collect data. This article focuses on the results from semistructured interviews, which were conducted with 30 healthcare professionals and 20 patients in a spinal cord injury unit in the UK. Findings suggest that the experience of team membership and decision-making is shaped by professional paternalism. Patients and professionals perceive that they are involved in a partnership where patients make decisions. However, different levels of paternalism in the professional-patient relationship within team decision-making processes emerged from the data. These have been categorized as 'open paternalism' where power and control lies with professionals; 'they tell me what they are doing' where patients are informed of decisions; 'they can always say no' where patients can agree or disagree; 'making the right choice' where patients are steered towards the choice professionals consider as the 'right' choice; and 'active participation' where patients choose the course of action. It is suggested that professionals should examine their own practice and attempt to develop ways of working that empower patients to become equal members of the rehabilitation team.