I am blogging my MRES. This may be incomplete, poorly cited (at this stage). But forms part of a writing discipline attached to design research. This post is part 2 of the thematic analysis done after the semi-structured interviews. (read the overview of thematic analysis here). Read about Parents of people with T1D here
“Our job is to make things better for people with diabetes” — P0008
The term Healthcare professionals (HCP) represents a very broad group of people who work in the healthcare sector. Specifically for diabetes care, the term refers to people who have direct involvement with care delivery. They range from nursing staff, psychologists, dieticians and medical doctors ranging in seniority and position.
Throughout research whenever I have spoken to this group, they all recognise the challenge that faces them working in diabetes care. Their experience of patients range from those managing well to those barely managing their care. They speak often about challenges around trying to help people who won’t manage their condition, getting the best of our clinical encounter, and about the frustrations with infrastructure. All however, seem dedicated to delivering the best care they can.
Managing clinical encounters is an art form.
Analysis of clinical encounters described during interviews, an HCP uses a range of strategies to engage and educate patients towards better condition management. The challenge for an HCP is how they manage this exchange for the benefit of the patient, that also lets them address issues on their clinical agenda, and inject their clinical expertise into the conversation.
To do this, a number of themes emerged.
Changing the roles in the clinical encounter
In terms of clinical encounters, both spoke about re-addressing the interaction so the PWD takes the lead. This change in relationship, I would assume is very different than the didactic approach experienced in others parts of health care. Their aim is to partner rather than lecture about the clinical expectation of condition management.
It’s crucial the patient knows my role is to empower, to give access, to support — P0009
A big part is discussing what they want to achieve — P0009
Subsequently the application of clinical expertise was perceived (by the HCP) as more valuable as it was contextually relevant to their individual experience of their disease.
It’s about understanding the broader picture to find out ways to adapt care — P0008
Recognise the lived experience of the disease.
HCP’s stressed the understanding that a PWD is more than their condition. Psychosocial aspects of condition management are seen as important as the clinical aspects. This is a common theme, that a person with diabetes is more than just the clinical measures of good management, primarily expressed as the HBA1C.
It’s easy to forget they have a life outside of clinical visits — P0008
Despite recognising the importance of the lived experience of the disease, the HCP’s recognise that just looking at the numbers is an easy trap to fall into. This may be due to time pressures of clinician encounters, but also that numbers are an easy marker of condition management to focus on. New technology can contributes to this data deluge. Which adds to another growing aspect of clinical encounters, trying to learn and teach a PWD about how to interpret the data.
Good rapport is a bridgehead into engagement
Building rapport was seen as key to establishing mutual trust and respect. Many important clinical conversations can begin with engaging in a completing non-health related topic. Subsequently, this opens up opportunities to interleaving clinical expertise with a patients lived experience, so as to engage the patient in adopting improved management strategies.
Other times, a recent acute episode may make the rapport easier to establish. Similarly,
T1D can be an incredible lonely condition. It was reported that many people with T1D don’t know anyone else with the condition. This lack of peer support reframes the role the HCP has, as they may be the only one they talk deeply about their condition.
There seems to be a ‘secret sauce’ to goal setting in this environment. Where the end state of this built rapport and mutual understanding allows the HCP to tease out increased motivation or a specific commitment from the PWD. However, this kind of positive encounter is born in an environment of shared decision. Where the shared responsibility, and any agreed changes to management are the result of a joint exercise.
I am bargaining with them all the time…[but for self management] the consensus needs to come from them.. — P0009
Seeing signs of success is sometimes difficult
One challenge from an HCP during clinic is trying to assess the impact of the encounter. It’s hard to measure. Most look for non-verbal cues to assess if the PWD is responding to the encounter.
During the exchange most HCP’s are typing notes, within the electronic record that is attached to their clinical notes. Both HCP’s This is then given to the PWD. How effective is this as a tool for behaviour change? Many feel notes of the clinical can simply be forgotten. In which case, they look for other signs of engagement, such as their behaviour outside clinic and their willingness to engage (through email, text and phone calls) with their care team.
Clinic is just a point in a continuum of care
Access to care isn’t just about clinical encounters. Most HCP’s see their roles as existing outside of the clinic.
We have a lot of fluidity in how we communicate outside of care…[and education] goes up and down in their agenda…so we have to be there like a lifeline — P0009
All are happy to engage in whatever communication tool is needed to continue the conversations outside clinic. Specifically, they see this ad-hoc encounters as a great educational opportunity. Especially as the advice is always in the context of the lived experience of the disease. Content is therefore highly relevant and very actionable.
This is a counterpoint to structured T1D management education programs like DAFNE that (as reported by an HCP interviewed) many people don’t have the time for. A DAFNE course runs for 5 days, and it’s hours are 9–5 each day (Dafne.uk.com, 2018).
A lot don’t have time for DAFNE, so we do Q&A sessions over email — P0008
Transition adds additional complexity
For an HCP, transition from peads to young adult through to adult care, is a particularly complex process to manage. In part because different people have different levels of maturity and capabilities. This means that the HCP’s understanding of the person informs how they behave.
Additionally, parental involvement also makes things additionally complex. This reflects an inherent conflict between HCP and parent. As the the focus of care shifts towards the patients managing their own care, the engagement of parents is reduced. This results in HCP’s managing a complex clinical encounter with patients, but also with parents.
It’s tricky, if Mum and Dad are intervening, it’s because the focus is on the patient — P0009
Conclusion
The role of a healthcare professional in T1D clinical care is complex. Creating good clinical encounters that improve the engagement and ultimately, the management of a PWD condition is challenge, but also their goal. I was amazed by the care and responsibility that all people interviewed has for their patients. They understand acutely massive disease burden in a condition like T1D and have seen, first hand, diabetes-burnout, and what that means.
