Inequality in Neurorehabilitation: Different practices among patients and relatives during rehabilitation after stroke and severe traumatic brain injury: a qualitative study

Brain injury rehabilitation is recommended for effective treatment and care after a stroke or a severe traumatic brain injury. Quantitative studies show that groups who are privileged (in terms of education length, income and employment) receive better treatment and services, while the less privileged groups receive fewer benefits and services. Examples of disparities in healthcare treatment rooted in Danish citizens’ socioeconomic position can also be found. This thesis examines whether such differences exist within brain injury rehabilitation and, if so, how inequality in rehabilitation plays out. Thus, the thesis focuses on practices exercised by individuals affected by stroke or severe traumatic brain injury in the rehabilitation process during hospitalisation at two university hospitals in Denmark. Inequality in health is illustrated by examining practices and strategies undertaken by patients and relatives in relation to the providers involved and by examining how patients/relatives’ possession of differential resources impact their access to and clout vis-à-vis rehabilitation services in the subfield of neurorehabilitation and how this potentially affects the overall rehabilitation process.
The overall goal of this thesis is to develop knowledge about rehabilitation practices primarily at the micro level (relationships between patients, relatives and providers) in order to understand how different resources and unequal backgrounds of patients and relatives may impact patients' rehabilitation processes. To reach this goal, two studies were conducted. The empirical material is based on observation and semistructured interviews with patients and relatives with stroke or traumatic brain injury. The theoretical framework is Pierre Bourdieu’s theory of practice with particular focus on the conceptual triad of habitus, fields and capital; as well as his concepts of strategy, position, positioning and disposition. The results are presented in three scientific articles. The objective of Paper I was to examine how patients and relatives mobilise resources in decision-making in a stroke unit. The study was designed as a qualitative study of ten patients and their close relatives. This study resulted in the development of a field-specific form of capital: rehabilitation capital,
which is a resource potentially benefitting patients and relatives during inpatient
rehabilitation, and which may provide patients with an advantage, ensuring that they have the best rehabilitation. The conclusion in Paper I was that rehabilitation capital adds a new theoretical component that may help explain certain dimensions of the interaction between patients, relatives and providers. This concept helps us understand current rehabilitation practice and provides a basis for suggesting improvements in clinical practice concerning the involvement of the patient and his or her relatives in rehabilitation care. The objective of paper II was to identify relatives’ strategies and practices in the rehabilitation process as seen in their meetings with providers. The study was designed as a qualitative study. The main finding was that we identified three different positions for relatives: the warrior, the observer and the hesitant relative. These positions illustrate how different positions and related dispositions of relatives influence their strategies. Differences were evident in how relatives act, participate and relate to both the patient and the viii
providers during rehabilitation. The conclusion in Paper II was that it is of utmost
importance that providers are able to differentiate relatives’ need for information, support and involvement. Knowledge about the three related positions offers a way of thinking that can help clinicians reflect on their own practice. The objective of Paper III was to identify possible facilitators and barriers differently positioned relatives are facing when being actively involved in the rehabilitation process of patients with traumatic brain injury. The study was designed as a qualitative study based on two exemplary cases. The analysis illustrates how relatives' differential and unequal resources function as facilitators and barriers for involvement in the rehabilitation process. The conclusion in Paper III was that different practices related to the amount and distribution of resources among relatives’ function as facilitators and barriers for their involvement in the rehabilitation process. Thus, it is a condition of life that patients and relatives have different socioeconomic and educational backgrounds and resources. Healthcare professionals should therefore be
able to compensate for these unequal practices and hence contribute to more equal and righteous treatment and opportunity for involvement of all patients and relatives, regardless of their position in social space and their resources.