We have all heard of the term ‘self management’ but what does it really mean? Is it just a fancy term devised by a health care professional to throw yet more responsibility on the person with diabetes or does it actually mean what it says? That a person with diabetes is independent, responsible, an expert in their [pull_quote align=”left”]a persons ability to self manage their diabetes had a direct impact on their capacity and motivation to continue looking after their diabetes[/pull_quote]own care and able to function and manage their diabetes everyday in an effective way?
It is in my opinion that a term like ‘supported self management’ would be a far more beneficial phrase. A person can only self manage their condition adequately if the right supports are in place that enables them to do this. Those supports come from within themselves, their personality and learning capabilities, their family and friends, their workplace and home, their social circles etc etc. I came across a recent study which fell somewhat under the radar in social media circles, but I felt it raised some every important points which deserve to be highlighted. I fear that certain health care professionals are afraid of ‘self management’ in their patients, that the patient may suddenly know more than the health care professional and we can’t be having that now can we? Also if people with diabetes decided to go off and actively self manage their condition, it is not going to make anyone any money now is it?
A study published on the 29th March 2012 by Susan Hinder and Trisha Greenhaigh of the BMC Health Services Research , looked at self management by people with diabetes. They took a sample of people with diabetes, split evenly down the middle in the number of Type 1 diabetes and Type 2, who came from a wide and varied demographic. They saw self management as people who mangaged their diabetes skilfully and flexibly, drawing on personal capabilities, family, social networks and the healthcare system. They recognized that a persons ability to self manage their diabetes had a direct impact on their capacity and motivation to continue looking after their diabetes. What has been central to self management policies in the UK (and I agree for Ireland as well) has been group education programmes like DAFNE, EXPERT and DESMOND. While they have been shown to have a short term benefit, long term these programmes have shown very little benefit, if none at all. In people with diabetes who came from lower socio-economic and ethinic minorities they had zero impact whatsoever.
What I have always truly believed is that everyone has their own learning style and when assisting and supporting someone with diabetes, this needs to be actively acknowledged and understood by the health care professional, otherwise all the education in the world makes no difference as to how someone long term will manage their diabetes effectively. Also a number of factors need to be acknowledged and addressed, like a persons relationship with core family members and friends, who do they see will support them the most. How do they manage their diabetes in work? Does anyone at work even know? Also, and I think this is one of the greatest under rated factors in having an influence on a persons diabetes, is the cultural aspect. How do we as a population view diabetes as a whole? Is it a dirty word or some sort of secret that we don’t discuss. At Diabetes Insight, I take a good long hard look at all these factors before [pull_quote align=”left”]It is widely known and recognized that a person with diabetes spends about 1% of their time with a health care professional in any given year, 99% of the rest of the time is looking after their diabetes themselves[/pull_quote]tailoring a plan of action for someone with diabetes, and it works, it has worked and continues to work for those who attend my practice for the last five years or more. And I keep reviewing it, because everyones circumstances will change, which may have a significant impact on a persons ability to be able to cope with their diabetes. As a health care professional, by knowing this and helping the person understand this, then we can move forward.
It is widely known and recognized that a person with diabetes spends about 1% of their time with a health care professional in any given year, 99% of the rest of the time is looking after their diabetes themselves. So it is vital as a health care professional to acknowledge this in people with diabetes and provide the proper education and support structures, but do we?
Within the study, participants were asked what they viewed as vital to their self management. They stated the following: how they feel physically, shopping, preparing meals, exercising, injection insulin, measuring blood sugar levels, coping with hypos, seeking and making sense of information, explaining to relatives, training relatives, access to health care, persuading doctors and nurses to support them in self managing, coping with feelings about diabetes such as anger and frustration. A very strong theme began to emerge throughout the study that diabetes was ‘work’, ”hassle’ and ‘grief’. I have always equated diabetes to being like a another full time job, that you take home with you, one where you never get weekends off or holidays.
Another recurring theme within the study and one which again I always explain to everyone I meet who has diabetes, is that when people are in a familiar environment and following a regular routine, their diabetes is so much better to manage. Diabetes loves routine, regular, balance. This has led to some people restricting their life outside what is familiar to them and therefore can only have a negetive impact.
What came across in this study from participants in regards to health care professionals is they felt their doctor or nurse did not see or value their knowledge, showed little interest in how a person self managed their diabetes and sometimes in some instances actively discouraged it. How can any indiidual have faith in a health care professional based on the following conversation which was actually witnessed by one of the researchers:
- HCP: Are you a diabetic?
- Harry: Yes
- HCP: On tablets or insulin?
- Harry: I’m on tablets and insulin?
- HCP: You are a Type 1 then?
- Harry: No I am a Type 2
- HCP: Well you must have become a Type 1 now?
What they did acknowledge in the study was that developing a continued and lasting relationship with a trusted health care professional was seen as pivotal by all the participants in helping to self manage their diabetes. From a health coaching perspective, what I find to be most true is that a person is not [pull_quote align=”left”]a person is not motivated by any action unless they see a benefit to themselves from that action[/pull_quote]motivated by any action unless they see a benefit to themselves from that action. This was apparent in the study, as some participants acknowledged that they viewed routine check ups for their diabetes as ‘pointless’ if their was no direct improvement to their diabetes as a result of attending these appointments.
When it came to why people with diabetes has periods of non mangement, the results were wide and varied. Financial, domestic duties, work, other health issues, lack of menu planning were all cited as interfering with the goal of self management, as well as lack of access and support to health care professionals when needed.
So what can we derive from this study? That self management of diabetes is hard work. It will fit into one individuals life better than anothers. Health care professionals need to educated on understanding and supporting more effectively, peoples desire to self manage their own condition. You cannot seperate diabetes from the individual when it comes to outside factors which have a direct impact on that persons ability to cope and manage with diabetes, but these factors are usually outside of a health care professionals control, such as family/work stressors.
I firmly believe in a persons ability to self manage their diabetes, I have to, because they are the ones who have to coexist with diabetes everyday. But I ensure as a health care professional that they have placed their trust in, that I put the proper education and support in place to assist someone in doing this, recognizing all the time, there will be obstacles in the way. But with the right support, it is possible and achieveable!!
If you want further information on the study mentionned go to: http://www.biomedcentral.com/1472-6963/12/83/abstract
Hinder S. Greenhaigh T. “This does my head in”. Ethnographic study of self management by people with diabetes. BMC Health Services Research 2012 12:83