Patient work

There is a lot of poor qualitative research out there.

Recently I reviewed an article in which the authors had spent three years studying people’s experiences of chronic pain. They didn’t identify any particular philosophy guiding their analysis, they just interviewed seven people and, somehow, came up with three ‘themes’: that pain was unpleasant; that it was aversive (something to be avoided); and it disrupted their lives.

This is a good example of bad qualitative research. And there is a simple test you can apply if ever you’re in doubt. All you need to do is to ask whether the research tells you anything you didn’t already know. This study took three years, but told us nothing new. Good qualitative research, on the other hand, should rock your world. It should shake the foundations of your beliefs, or at least make you pause for a moment to consider the possibility of a bigger perspective.

Over the last couple of weeks I’ve read some really good examples of this.

The first piece wasn’t a research study at all, but a book review. The book Personalized Medicine: Empowered Patients in the 21st Century? by Barbara Prainsack was being reviewed by Andrew Bartlett (link), and it came at an interesting time because I’d just been in The Netherlands talking at the ENPHE conference, where the language of positive health had definitely left its mark. Positive health draws on texts like the Ottawa Charter to argue that health is about resilience, adaptability, and self-management (not merely the absence of disease). The logic of this is seductive, but any self-respecting critical thinker would surely ask why it is only now that such ideas have come to prominence.

Prainsack’s book focuses on the language of empowerment, patient work and personalisation, but doesn’t accept the superficial logic of positive health. Instead it sees them as being a product of the ‘increasing individualisation of patients (which is the product not only of advances in biomedicine and information technology, but neo‐liberal politics) [that, in turn] “moves out of sight collective factors such as the social determinants of health” (p18)’ (link). As far as I’m aware, such insights have yet to feature anywhere in the physiotherapy literature.

In a similar critical vein, Justin Waring and Simon Bishop’s paper Health States of Exception: Unsafe non‐care and the (inadvertent) production of ‘bare life’ in complex care transitions (link) argues that modern practices of hospital discharge are harmful and degrading. (In this study physiotherapists were the 2nd largest occupational group represented.)

Using the work of Giorgio Agamben as their theoretical guide, the researchers showed how often people found hospital discharge to be disempowering and dehumanising. More significantly for us as healthcare professionals, however;

‘[A]ll too often those working within the care system accept this potential [for discharge to be degrading], possibly because they are pressured to focus on their discrete part of the care process, and because operational pressures require staff to ‘push’ people through the system (Waring and Bishop, 2019).

Importantly, the ‘use of formal assessment criteria to determine eligibility further renders people as ‘unknown’ and makes legitimate the deprivation of care’. This is worth repeating; ‘formal assessment criteria…makes legitimate the deprivation of care’.

And as has been seen elsewhere, efforts by managers and regulators to prescribe good care, or to mandate specific processes often serve only to ‘remake the practices and cultures that foster degrading and harmful treatment’ (Waring and Bishop, 2019). So again, what is our view on this?

The third example comes from Danish researchers Malene Bødker, Ulla Christensen, and Henriette Langstrup. In Home care as reablement or enabling arrangements? An exploration of the precarious dependencies in living with functional decline (link), the authors challenge the logic of autonomy and independence. They find that home care applicants:

• are often too deeply dependent on the capacities of others in order to have their independence restored
• negotiate individual meanings of independence to maintain their identity as able human beings
• and might possibly gain new capacities through reablement, yet these are not individual and stable achievements, but rather temporary effects of the care relations with eldercare professionals (Bødker, Christensen & Langstrup, 2019).

What these three papers argue, in different ways, is that we are being seduced by ideas about individual agency and responsibility, and that many of the grander social narratives governing the way people experience health and illness in the real world are being ignored.

These ideas are playing out in the everyday practice of physiotherapists, but it is unclear why we have so willingly accepted these beliefs. We do not know what it means for the people we serve, or our professional identity.

A point I made in my talk at the ENPHE conference was that clinical trials, RCTs, and evidence-based practice dogma will not help us with these grand questions. Neither will third-rate qualitative research. If we are going to understand where physiotherapy is going in the future, we will need much more research like this, difficult though it is to read, because without robust, critical scholarship (and the conversation within the profession that hopefully follows), we may find that what we thought was ethical conduct is anything but.