A qualitative study into patient participation in decision-making in spinal cord injury rehabilitation

Abstract

In recent years there has been considerable pressure from both patients and professionals for greater patient involvement in the delivery of health services, particularly in rehabilitation. However, it has been suggested that involvement by patients is limited. The physical, psychological and social dimensions of a spinal cord injury require major lifestyle changes and therefore many decisions need to be made by patients and professionals. The purpose of this study therefore was to explore and describe patients and professionals experiences of patient participation in decisionmaking processes in spinal cord injury rehabilitation. A qualitative approach using ethnographic techniques was adopted for the study. Data were collected using semistructured interviews and participant observation. Twenty patients and thirty health care professionals from a spinal cord injury unit in England participated in the study. The findings contribute to the work already available on patient participation in decision-making by placing it in a spinal cord injury rehabilitation context. This study identified that the experience of team membership for participants was shaped by professional paternalism. Patients and professionals perceive that they are involved in a partnership where patients make decisions. However, there appear to be different levels of paternalism in the professional-patient relationship. Patient participation in team processes is seen to be desirable but does not occur in a in the context of an equal partnership. Rehabilitation was defined as both a process and an outcome that involves developing skills, returning to ones previous life and becoming empowered. The definitions are not mutually exclusive, as patients need skills to be able to pick up their lives again and take control of their own decision-making within an empowering environment. The definitions might also occur as a model for some patients as they progress through the disability career and cope with life changes. Previous work on rehabilitation has tended to define it as a structure a process or an outcome and the concept of a process-outcome model has not necessarily been articulated. The implications of this model for practice are that while in the hospital phase patients need to be equipped with as many physical, psychological and social skills as possible because once discharged they may not be able to return to learn new skills or develop old ones. This highlights the importance of supporting problem solving and decision-making. This study also found that among professionals there were considerable misperceptions about the roles of others within the team. Findings suggest a 'knowing paradox' in that professionals perceive that they know what their colleagues' role is but that their colleagues have little understanding of their role. This may impact upon the patient experience if they become caught up in power relationships between different professional groups. The thesis concludes by suggesting that there is a need for professionals to examine their own practice to ascertain if they are working in an empowering way. The development of a definition of participation could provide a philosophical focus for patients and professionals. Patients and professionals could jointly identify ways of improving patient participation in the decision-making process, implement a change in practice and evaluate the outcome.