Pasientforløp for håndartrose

Nylig forsvarte Magnussen sin avhandling: «Between patient participation and healthcare standardization – The ordering of work in managing hand osteoarthritis».

Hun har undersøkt hvordan arbeid i helsetjenesten organiseres for å håndtere håndartrose. Fokuset er spesielt på balansen mellom pasientdeltakelse og standardisering.

Behov for ny organisering

Kroniske sykdommer blir stadig vanligere, og dette skaper behov for nye måter å organisere helsetjenestene på.

Å forskyve oppgaver fra leger til andre kan gjøre helsevesenet mer bærekraftig. Økt pasientdeltakelse bidrar til at skillene mellom pasienter og helsepersonell blir mindre tydelige.

I stedet for at helsepersonell har ansvaret alene, handler det nå mer om samarbeid og partnerskap mellom pasient og behandlere. Dette forandrer både hvem som tar beslutninger, og hvordan oppgavene fordeles.

Samtidig blir helsetjenestene mer standardisert, men med større vekt på at pasientene skal delta aktivt. Dette påvirker hvordan arbeidet i helsevesenet organiseres.

Grensene for hvem som gjør hva, når og hvordan, blir mer fleksible. Flere oppgaver og mer ansvar blir overført til pasientene selv, som må håndtere sykdommen i sin egen hverdag.

Flytting av oppgaver og ansvar

I denne avhandlingen viser Magnussen at både revmatologer og ergoterapeuter mener at ergoterapeutledet behandling er en god løsning for pasienter med håndartrose. Dette støttes av pasienter.

Ifølge pasientene er det viktig å føle seg trygge på at behandlerne har riktig kunnskap for å gi dem god behandling. De vektlegger også god kommunikasjon. Det betyr mindre for dem hvilken yrkesgruppe, eller nivå i helsetjenesten, som står for tilbudet.

Pasienter er en viktig del av behandlingen

Pasientene peker på at det finnes få behandlingsmuligheter. De må selv ta mye ansvar for å håndtere sykdommen i hverdagen.

– Pasienter gjør en stor innsats når de lever med håndartrose. Dette arbeidet starter før de oppsøker helsevesenet, og det må fortsette livet ut.  Denne innsatsen bør støttes og anerkjennes i helsevesenet, sier Magnussen.

Arbeidsflyt på sykehus

På sykehus er det ofte hierarkier: Revmatologer leder behandlingen, mens ergoterapeuter tilpasser arbeidet til pasientenes behov.

– Ergoterapeutene sørger for at behandlingen flyter godt. De gjør mange oppgaver i kulissene som sikrer helhet i forløpet, forklarer Magnussen.

Hun har funnet at arbeidet som binder sammen ulike oppgaver, ofte undervurderes.

– Dette kaller forskere «usynligarbeid» og det er helt nødvendig for å få til et godt behandlingsforløp, sier hun.

Tilpasning til den enkelte

Hun har også sett på hvordan pasienter og behandlere samarbeider om å håndtere sykdommen. Retningslinjene brukes ikke rigid, men som støtte til forståelse og tilpasning.

– Det gir rom for å tilpasse behandlingen til hver enkelt pasient, forklarer Magnussen.

Et nytt samspill i pasientforløpet

Endringene i helsetjenesten påvirker pasienter og helsepersonell på ulike måter. Det er derfor viktig å ha en helhetlig tilnærming med oversikt over hvordan endringene påvirker hele forløpet. Det er også nødvendig å ha gode strategier for å håndtere endringene på best mulig måte.

Når formålet med endringer innen helsetjenesten er å kunne tilby bærekraftig og god behandling for pasientene, er det viktig at alle involverte parter jobber sammen. Når alle tilpasser seg og ser viktigheten av det «usynlige arbeidet», blir løsningene bedre.

Prøveforelesning

Magnussen holdt en prøveforelesning, som en del av doktorgradsprøven. Tittelen var: 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"?

Veiledere

Magnussens hovedveileder var professor Marte Feiring ved OsloMet. Professor Ingvild Kjeken ved OsloMet og Diakonhjemmet sykehus og førsteamanuensis Irma Pinxsterhuis ved OsloMet var biveiledere.

Offentlig forsvar

• Første opponent: Dosent Niels Sandholm Larsen, University College Copenhagen
• Andre opponent: Forsker Gunvor Aasbø, Universitetet i Oslo
• Leder for komiteen: Professor Kari Toverud Jensen, OsloMet
• Leder for disputasen: Førsteamanuensis Hedda Eik, OsloMet

Les mer om Magnussens forskning:

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 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.