There's a lot of jargon, but some interesting observations that are worth reading about. This bit interesting:
The approach was overall patient-centered, but often the health professionals obviously adhered to care logics that valued different activities than those valued by the patients and established a moral scale of activities. For example, often the occupational therapist engaged in suggesting and directing patients into activities justified as joyful, based on the principle that patients should prioritize activities that give better quality of life. Doing “happy” things, however, established a new moral scale apart from the affordance to balance ordinary activities. Trying with good intentions to empower the individual and her personal desires, risked making the patients feel even more shameful when not making that priority. It set a norm for the patient, on top of what the sick role prescribed (Varul 2010). Ultimately, talking about regulating daily activity ...possibly obfuscated patients’ needs rather than illuminating them (Salmon and Hall 2004).
This recommendation that we "put some time aside for joy" is one many of us have received. And sometimes, its innocent. But there's a kind of dark side to it, that somehow you're not doing things right... or even worse, that somehow you've made yourself sick by not being "happy" enough.
I liked the discussion on this issue, and it made me realise how inappropriate it is for therapists to prescribe what sort of activity the person should prioritise. That should be based on
their values, shouldn't it? If you're desperately worried about your job or your children's welfare, then why would you waste your limited energy to do innane but "happy" things - and is that really going to make you happier in the long run, if it means you deal even less well with the things you really value? Okay, so maybe a supportive person can help you think through your own priorities, and address the guilt, but then the final decision has to be yours.
Negatives:
* A lot of talk about "agency", which was jarring, because I felt the patients were being talked down to with the "advice" they were given, and their role as active agents in coping with their limitations was undermined. Directing people on how to do their daily activities in order to "give them agency" seemed to me arse about face. It might (or might not) give people some relief, but not
agency - which can surely only come from helping them to discover what works best for them. You could really hear how the patients were sick and tired of being "instructed".
* Narrative approaches in general are starting to emphasise the idea of groups having ownership of their narratives, and participating actively in the research process. So for example, it would be considered inappropriate for a white person to singlehandedly interpret the narratives of black people - they would be expected collaborate with black researchers. Likewise for LGBTQ narratives - a straight person singlehandedly interpreting these narratives would be seen as well below standard. So why doesn't this apply to people with chronic illness? Why should our personal stories be "colonised" by healthy people, and subject to all their judgements and assumptions about us? It struck me that this really does need to change.
* There is no talk at all about the authority with which the various types of activity advice were given. But that's huge. We know that much of this stuff is just made up by the therapists because they like the idea that it might work (sleep hygiene, balancing out boom and bust etc.), but in this setting its delivered as scientific and authoritative, so that puts the patients in a position where they have to be seen to respect it at some level, even when it clearly doesn't work for them.
