By Elizabeth Lynch
Reading about person-centred care can only go so far, but after talking to researchers and seeing it in practice I understood this concept much better. The philosophy of person-centred care that was developed and tested by the team at the Centre for Person-Centred Care Research at the University of Gothenburg is that a person is a complete being, not just a patient affected by a particular medical condition.
In Gothenburg, when health professionals first meet a patient, under the person-centred care model, they try to get to know that person – what are their concerns, motivators and goals. These early discussions between the health professional and the patient might involve the medical condition or they might centre on completely different areas. It depends on what is important to the patient. While this seems like quite a small thing, it does significantly change the way goals are planned and addressed (there are also recommended ways of goal-setting, recording and updating goals). From a personal view this did make sense to me, because, if I was admitted to hospital unexpectedly and ended up staying there for a few days, one of my main concerns would be who would look after my children; if I did not have childcare organised, I can imagine I would be quite distracted and not be able to take in information very well about my medical condition and treatment options. If I knew the kids were organised, I would be able to concentrate on the medical side of things.
I also visited the Rehabilitation Medicine Research Group (hosted by Hanna Persson) at the University of Gothenburg. There I met a number of researchers, research students, and gave some presentations to researchers and clinicians (one I was asked to give for 3 hours, in English which was not great for my ego as people started looking really sleepy after not very long…).
Another great experience was ‘shadowing’ some physiotherapists on the acute stroke unit in Sahlgrenska University Hospital. It was really interesting to see at the initial assessment of a person admitted with stroke, information is collected about how active people are before their stroke (this gets entered into a registry) and seeing person-centred care in action, with the routine question asked: “What does having this stroke mean to you?”
After a week in beautiful Gothenburg, I travelled to Leeds and met A/Prof David Clarke, who was running a workshop as part of the study Using co-production to improve patient carer and staff experiences in health care organizations: a multi-centre, mixed methods evaluation in inpatient stroke units. I sat in on a group workshop in one hospital and afterwards chatted to staff who were involved in the co-production work; actually hearing how this sort of work unfolds. David was really generous and shared lots of tips and tricks about co-production that he has learned along the way. The following day, I visited Leeds University and met researchers and gave a presentation on stroke rehabilitation pathways in Australia.
Next was Oxford for the Evidence Live conference. Here I presented about the research translation work we have done within the Centre of Research Excellence and presented a poster about the low proportion of implementation and evaluation work being published in stroke and rehabilitation journals.
Researchers from the Manchester CLAHRC (Collaboration for Leadership in Applied Health Research Centre) ran a symposium on co-production and I met with them. One of these presenters was Sarah Knowles who was a co-author with me on a paper about how to choose an implementation theory. As an aside, this paper was one of @BioMedCentral top Altmetric scorers for 2018 (altmetrics track the attention a publication gets online). Sarah and I had only ever met via videoconference, so it was great to meet her in person. Another presenter was Paul Wilson who is an editor of the journal Implementation Science, who gave me the inside scoop on what the editorial team look for when choosing articles to publish in that journal.
Sounds like lots of work, but I also managed to fit quite a lot of sightseeing in too – dinner on an island near Gothenburg, swimming in the North Sea and walking through the Yorkshire Dales – lots of perks to having a research study trip and being hosted by very generous research colleagues!
I was really grateful to receive support from the CRE to visit researchers in Sweden and the UK. I felt I achieved my aim of how to improve the way we involve people who have been affected by stroke (both stroke survivors and their family members) in routine care as well as in research.
Liz Lynch all scrubbed up for a visit at Sahlgrenska University Hospital
David Clarke (University of Leeds), Louise Connell (University of Central Lancashire), Liz Lynch, Anne Clarke – drinking tea in our wet weather gear, walking through Yorkshire Dales on a mid-Summer weekend