New doctorate: Patient course for hand osteoarthritis

How can the healthcare system deal with chronic diseases in the future? Hege Johanne Magnussen has researched this and interviewed patients and healthcare personnel about the course of hand osteoarthritis. What contributes to, and what stands in the way of, the transfer of responsibility, roles and tasks between practitioners and levels in the health service?

Caption: Hege Johanne Magnussen has obtained her doctorate. Here you see her third from the left. The others are her two assistant supervisors, associate professor Irma Pinxsterhuis at OsloMet and professor Ingvild Kjeken at OsloMet and Diakonhjemmet Hospital and her main supervisor, professor Marte Feiring at OsloMet.

Patient participation and standardization

On Friday 10 January, Magnussen defended his thesis: "Between patient participation and healthcare standardization - The ordering of work in managing hand osteoarthritis".

She has investigated how work in the health service is organized to deal with hand osteoarthritis. The focus is particularly on the balance between patient participation and standardization.

Need for new organization

Chronic diseases are becoming increasingly common, and this creates a need for new ways of organizing health services.

Shifting tasks from doctors to others can make the healthcare system more sustainable. Increased patient participation contributes to the distinction between patients and healthcare personnel becoming less clear.

Instead of healthcare personnel having the responsibility alone, it is now more about collaboration and partnership between patients and practitioners. This changes both who makes decisions and how the tasks are distributed.

At the same time, health services are becoming more standardized, but with a greater emphasis on patients' active participation. This affects how work in the healthcare system is organised.

The boundaries for who does what, when and how become more flexible. More tasks and more responsibility are transferred to the patients themselves, who have to deal with the disease in their own everyday life.

Transfer of tasks and responsibilities

In this thesis, Magnussen shows that both rheumatologists and occupational therapists believe that occupational therapist-led treatment is a good solution for patients with hand osteoarthritis. This is supported by patients.

According to the patients, it is important to feel confident that the therapists have the right knowledge to give them good treatment. They also emphasize good communication. It matters less to them which professional group, or level of the health service, is responsible for the offer.

Patients are an important part of the treatment

The patients point out that there are few treatment options. They themselves have to take a lot of responsibility for managing the disease in everyday life.

- Patients make a big effort when they live with hand osteoarthritis. This work starts before they seek healthcare, and it must continue for the rest of their lives. This effort should be supported and recognized in the healthcare system, says Magnussen.

Work flow in hospitals

In hospitals, there are often hierarchies: rheumatologists lead the treatment, while occupational therapists adapt the work to the patients' needs.

- The occupational therapists ensure that the treatment flows smoothly. They do many tasks behind the scenes that ensure integrity in the process, explains Magnussen.

She has found that the work that ties together different tasks is often underestimated.

- Researchers call this "invisible work" and it is absolutely necessary to achieve a good course of treatment, she says.

Adaptation to the individual

She has also looked at how patients and therapists work together to manage the disease. The guidelines are not used rigidly, but as support for understanding and adaptation.

- This gives room to adapt the treatment to each individual patient, explains Magnussen.

A new interaction in the patient process

The changes in the health service affect patients and health personnel in different ways. It is therefore important to have a holistic approach with an overview of how the changes affect the entire process. It is also necessary to have good strategies to handle the changes in the best possible way.

When the purpose of changes within the health service is to be able to offer sustainable and good treatment for patients, it is important that all parties involved work together. When everyone adapts and sees the importance of the "invisible work", the solutions become better.

Trial lecture

Magnussen gave a trial lecture, as part of the doctoral exam. The title was: How can the introduction of the term "work" provide new insights into individual and professional management of chronic illness, as compared to terms like "self-management," "coping," and "illness-behavior"?

Supervisors

Magnussen's main supervisor was Professor Marte Feiring at OsloMet. Professor Ingvild Kjeken at OsloMet and Diakonhjemmet Hospital and associate professor Irma Pinxsterhuis at OsloMet were assistant supervisors.

Public defense

• First opponent: Docent Niels Sandholm Larsen, University College Copenhagen
• Second opponent: Researcher Gunvor Aasbø, University of Oslo
• Chair of the committee: Professor Kari Toverud Jensen, OsloMet
• Supervisor of the defense: Associate Professor Hedda Eik, OsloMet

Read more about Magnussen's research:

Thesis abstract

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 professionals 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, prioritise, 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.

Nevertheless, 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 jointly 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.