Public defence: Hege Johanne Magnussen

In this dissertation, I have explored the ordering of healthcare work in managing and coping with chronic illness, hand osteoarthritis, at the intersection of patient participation and healthcare standardization.

The rising burden from chronic illness calls for new models of care. Care pathways and task shifting strategies are considered relevant responses in developing sustainable healthcare. These new healthcare models, when implemented, contribute to blurring the boundaries between patients and health professional in responding to chronic illness.

Transforming working relationships between patients and health professionals from that of cure-and caregiving to partnering and co-creation alters actor positioning and responsibilities, and subsequently, decision-making.

Healthcare standardization in tandem with stronger calls for patient participation also contributes to the shaping of healthcare working processes.

Consequently, the boundaries between who should do what, when, where, how, and with what knowledge and skills become increasingly flexible as more responsibilities are shifted from health professionals and healthcare institutions to the chronically ill at home.

Method

Although healthcare work has been explored and understood from various academic disciplines, positions, and perspectives, the focus on healthcare organizations or healthcare professions often excludes patients from the activities that are involved in the healthcare working processes.

At the same time, the literature on the work of patients highlights patient efforts in managing chronic illness.

However, exploring the work of patients in combination with the work of health professionals and how those healthcare practices are shaped by patient participation and healthcare standardization, has been less explicitly studied.

Against that backdrop, and in conceptualizing work as actions of patients and health professionals in negotiating order and change in the hospital, combined with activities involved in coping with a chronic hand condition at home, this dissertation explores the ordering of work in coping with and managing chronic illness.

The dissertation is based on interviews with patients and health professionals, and observations in clinical consultations in two Norwegian hospitals specializing in rheumatology.

Results

The results presented in this dissertation are threefold.

Work of patients in managing chronic illness

First, taken-for-granted ideas regarding hand osteoarthritis as ordinary and expected with age shape patient actions. Prior to, during and after clinical encounters, they make efforts to cope with, prioritize, and self-manage a chronic illness that does not warrant healthcare attention.

The unacknowledged characteristics of patient work render it invisible despite considerable efforts in everyday life and illustrates how the interconnectedness of patient and health professional working processes are underpinned by negotiations, power, and dependency, which not only shape decision-making but also contribute to keeping the work of patients out of sight.

Nonetheless, this articulation work of patients in managing chronic illness contributes substantially to seamless and coherent healthcare.

Hospital working processes

Second, hospital working processes are shaped by a hierarchical ordering that impacts negotiations and decision-making.

The diagnostic organization of tasks preserves rheumatologist authority and control over the direction of the trajectory, which in turn sets in motion the work of occupational therapists who enhance their responsibilities through evidence-based recommendations in rheumatology.

In this process, occupational therapists align their clinical tasks with the tasks of rheumatologists, which contributes to establishing the necessary congruence to keep the trajectory on course. Although this work is central, the tinkering of occupational therapists is often taken for granted.

Knowledge about hand osteoarthritis

Third, knowledge about hand OA was constructed from various sources of knowledge that were brought into consultations through a polyphony of ideas to make sense of chronic illness.

Reaching new understandings conjointly serves as a catalyst for the activation of subsequent tasks when power is shared to make decisions that are understandable and acceptable to both patients and health professionals.

In this process, health professionals use standards as tools rather than rigidly following pre-planned protocols and pathways, which enables the bringing together of relevant tasks into working arrangements.

Similarly, in trusting health professionals to set the agenda, patients articulate work and bring tasks together when they make efforts to connect their own lifeworld with the healthcare world of standards.

Conclusion

These working processes that are made into being through interaction, highlight the centrality of managing tensions and show how the work that is enacted along the illness trajectory is a complex process of negotiation where the actors depend on each other in ameliorating discontinuous elements to construct a coherent whole.

These efforts of patients and health professionals in maneuvering the space between patient participation and healthcare standardization are not tasks that are formalized and assigned to particular actors. On the contrary, they are taken for granted by all stakeholders.

Consequently, articulation work gets secondary value rather than being acknowledged as the supra-type of work that enables other work to function and get things accomplished in locally negotiated orders.

In this ever-changing healthcare environment, it is not just about preparing health systems and health professionals for the major ongoing shift in managing chronic illness through the restructuring of healthcare systems.

Equally important is ensuring that patients are adequately equipped to cope with and manage their chronic conditions at home.