"Men jeg er jo en helhed": meningsskabelse, perspektiver og patientinddragelse i hjerterehabilitering

This PhD thesis investigates patients’ ways of making sense of heart disease, and how patient perspectives are shaped by both subjective and institutional resources of interpretation.

Researching patient perspectives and patients’ ways of making sense of disease/illness is actualized by a growing interest in patient involvement within healthcare services and by the call for more knowledge of patients’ perspectives within the field of cardiac rehabilitation with the aim of improving cardiac rehabilitation programs.

The thesis is anchored in social constructivist and ethnographic approaches. The empirical material is produced through ethnographic fieldwork and open, in depth, and repeated interviews. Following five patients with ischemic heart disease over a period of one year, the participants were interviewed three times: before initiating the cardiac rehabilitation program, shortly after its termination, and lastly one year after their cardiac incident. During their participation in outpatient cardiac rehabilitation, I attended their activities which consisted of patient education sessions, physical exercise, and individual consultations with varying healthcare professionals from different professions. The ethnographic approaches employed draws on institutional ethnography (Smith, 2005), narrative ethnography (Gubrium & Holstein, 2009), and multi-sited ethnography (Marcus, 1995).

Theoretically three perspectives that addresses different aspects of the empirical material are employed. One perspective contains a focus on knowledge and exchanges of knowledge, and within the framework of Berger and Luckmann’s sociology of knowledge cardiac rehabilitation is framed as a process of secondary socialization, in which the exchange of knowledge is considered to have a function. This section of the theory chapter also addresses knowledge forms within patients’ perspectives (based on ideas from Pols (2010, 2013, 2014) and Smith (2005)), which are then discussed in relation to common conceptions in the patient involvement literature in which the patient perspective is regarded as a perspective containing mere experiential knowledge. In the second section, a narrative framework (Gubrium & Holstein, 2009; Järvinen, 2004; Mattingly, 1998) is established to analytically address subjective as well as institutional dimensions of creating meaning narratively. The third section present Ganniks (2005) theory of illness as a social and relational phenomenon, which highlights illness as integrated in the structures of everyday life.

Analyses are divided into four chapters that shift focus dedicating analytical attention respectively to the institution and to patients’ ways of creating meaning and their perspectives on disease/illness. The last chapter sets focus on the entanglement of subjective and institutional understandings present in the patient’s ways of creating meaning.

The first analysis contains disease/illness portraits of the five participants. The analysis is centered on the subjective resources of interpretation that participants draw on in making sense of their condition, its causes, and consequences. The portraits provide insights on how heart disease is linked to the particularities of the life situation and to subjective narratives.

The second analysis (article) employs an institutional ethnographic approach and provides insights on how institutional ruling relations impact the activities of cardiac rehabilitation and the ways in which healthcare professionals interact with patients, and hence also shape how patient involvement can unfold in the context of the cardiac rehabilitation program.

The third analysis focuses on the rehabilitation program as an environment, that contains specific resources of interpretation. The analysis frames the rehabilitation program as a narrative environment and as a process of secondary socialization. The focus is on the different layers of knowledge that patients are introduced to during the outpatient program and what kind of patient role the exchange of knowledge points to.

In the last analysis one single patient’s pathway is analyzed chronologically. Focus is on developments and shifts in the patient’s perspectives on disease/illness and on how symptoms are interpreted in changing ways and how different forms of knowledge play a part in this. It is analyzed how the patient’s subjective knowledge and narratives are handled by healthcare professionals, and how generalized institutional narratives are articulated by both patient and healthcare professionals in ways that are significant and consequential.

The institutional analysis points to cardiac rehabilitation as a practice with an educational aim directed at transferring health(professional) knowledge to the patient. The healthcare professionals’ actions and interactions with patients are oriented towards identifying patient’s gabs of knowledge and risks in the patient’s lifestyle. This endeavor defines the patient’s problems from an “outside and above” point of view. A central plot of progress is identified as structuring the narrative environment of the rehabilitation program. This plot of progress is significant in healthcare professionals’ interpretations of the patient. The narrative of progress builds on the understanding of a patient with a lack of knowledge and consequently must be educated to be able to manage disease, which is synonymous with complying with heart friendly recommendations. There is an endeavor to make the patient understand and adopt health professional and biomedical understandings of the cardiac condition with the aim of cultivating and support compliance. This is conducted in ways that aim to intervene in the patient’s “outer” actions as well as their “inner” thoughts, feelings and mental approaches towards the disease and lifestyle changes. On this background patient involvement is a matter of shaping the patient perspective and less a matter of exploring or understanding the perspectives of the patient.

Furthermore, it is highlighted that the pregiven understandings of the patient’s problems and the dominating orientation towards creating a compliant expert patient leaves little room for patients’ subjective ways of defining problems, needs and solutions and reduces possibilities of bringing patients’ knowledge into play. At the same time the rehabilitation program place conflicting and ambivalent demands on the patient, while also transferring considerable responsibilities to the patient. Here a problematic central to heart disease is highlighted, namely the assessment of individual risk, which is an uncertain endeavor for patients as well as for healthcare professionals.

Regarding the patients’ perspectives and ways of creating meaning, the analysis points to the nuanced and comprehensive interpretive work that patients engage in, and that patients in their ways of making sense of disease/illness draws on interpretive repertoires of both health professional and subjectively anchored forms of knowledge. Their actions towards disease/illness must be regarded as multi-faceted and closely linked to their individual life situation. Individual life situations contain emergent and individually particular problems which are relevant to the management of the cardiac condition. These emergent problems of the life situation may be closely or more loosely linked to the cardiac condition; however they are highly significant for patients’ assessment of the relevance and appropriateness of specific actions towards disease/illness. Hence, in the light of the ambition in cardiac rehabilitation to support patients in managing their condition, it is highly significant that healthcare professionals gain knowledge of patients’ individual perspectives and subjective ways making sense of and managing disease/illness.

The analysis of one single patient pathway highlights that the patient engages in the interactions with healthcare professionals in different ways relative to which emergent problem that is foregrounded. It points to a patient perspective that in some regards is stable and coherent and in other regards is shifting and dynamic and, in many ways, dependent on interpretations of healthcare professionals. However, the analysis shows that interpretations of healthcare professionals are also shifting and unstable and that the health professional knowledge forms does not lead to any unified or coherent interpretation of the patient, his symptoms or condition.

Furthermore, the analysis shows how the patient articulates institutional narratives and interpretations at some points in time and in some regards, but also maintains and insists on his own perspectives and that this a dynamic and situated matter. At the same time analysis highlights that the patient’s perspectives are listened to first and foremost when they are in line with the dominant institutional understandings.

Finally, a central point in the thesis is that the idea that the problems of the patient can be remedied by transferring health professional knowledge to the patient is problematic. The conception of a patient with a lack of knowledge leads to a program that does not meet the patient with an interest in the patient’s knowledge or perspectives on the problems that the disease/illness give rise to. Hereby cardiac rehabilitation risks rending itself irrelevant to the patient. The responsibilities that are transferred to the patient in cardiac rehabilitation are problematized as well.

Following these conclusions, the thesis addresses discussions about the relevance and legitimacy of patient perspectives in health care services. The argument highlights that it would be fruitful in the discussions of the relevance and legitimacy of patient knowledge to recognize that patient involvement is not the same across contexts, and how the patient’s knowledge becomes relevant varies and must be discussed with attention to specific contexts. Consider for example the differences in how patient knowledge is relevant with regards to patient involvement in the process of diagnosis, treatment or rehabilitation concerning the management of disease/illness in everyday life.

Furthermore, the implications of the conception of patient perspectives as dynamic and composed of different forms of knowledge are discussed. The argument highlights that the understandings of patient perspectives (in practice as well as in the research) as either a perspective composed of experiential everyday knowledge alone, or as a perspective primarily shaped by institutional discourse, can both be seen to represent a delimitation of the perspectives of patients. There is a risk that such understandings place restrictions on what patients can talk about and what counts as experience. Furthermore, it is pointed out that when the patient perspectives are viewed as situated, dynamic and shifting, patient involvement must be seen as a process requiring continuous attention, reflection, and receptiveness.