More and more of us are looking online for information to support our health (see Chris Allen’s work on support in Online Communities). In my research, I have found that the ability to get hold of that information and support, which is personal to you, can make a huge difference to how well you are.
I’m focusing on insulin pumps, which are an alternative means to deliver insulin to people with diabetes – compared to the more traditional multiple daily injections.
Insulin pumps have been developed to help people with Type 1 diabetes manage the condition better; both in terms of their quality of life and by more closely resembling a fully-functioning pancreas.
However, introducing a new health technology to an already difficult to manage condition is not necessarily simple, or easy.
What I have found so far is that a complex new health technology can be overwhelming for the person using it, and it takes time, motivation and confidence for the technology to become a normal part of life.
Getting access to support, which is personal to oneself – from health care professionals, friends and family – can help this process. I have also found that the information and support that people seek, or need, isn’t from one specific kind, or source. What people want, and need, can vary widely; from receiving support from your health team about how to set up this new device, to learning practical tips for where to place the pump on your body, from other people with a pump.
This research promotes a distinct move away from the term “medication adherence”, which suggests that people are choosing not to “engage” in their health. Far from it; I feel that people have individual needs to help them manage their diabetes, and I want to know exactly what those are.
My research shows that it’s potentially stressful introducing a new and complex technology into your life. However, we also know that social networks and good social support are linked to better functioning, fewer psychosocial problems and improved self-management in people with diabetes, in general.
A study¹ (by Ben Shaw et al. in 2006) suggested that social and material resources and nearby access to these, are also relevant to our ability to support self-management. With this in mind, I want to speak to people currently living with an insulin pump to find out what social and material resources have been of value to them.
I’d really like to hear from you if you are currently using an insulin pump and living on the south coast of England (Bournemouth, Southampton, Winchester and Portsmouth, and surrounding areas). Hearing from you is incredibly important because it will allow me to adapt an online support tool (named Genie) for you and others like you.
Genie has been designed to visually map the health support that someone gets. Genie then helps link support and resources to people in their community. Basically, you say what you might like to know more about in your community – say creative activities (creative writing, reading groups etc.), exercise groups/classes or maybe even peer support groups in your area, and it will show you where these are, how often they meet and how to access them.
I want to add information to Genie with suggestions from the people who know best – people currently using an insulin pump.
After speaking to current pump users, the next stage of my research will be to introduce new pump users to Genie. This will give them the opportunity to easily access key support and information in their local area, with the hope of helping them to adapt more smoothly to this new pump technology. The long-term goal is to then offer Genie as a potential aid to more people with diabetes, and others living with a long-term condition.
If you’d like to be involved please do get in touch, I’d love to hear from you! My email is email@example.com or call me on 023 8059 7628
Finding the right words
The research world is littered with it’s own shorthand. Like any ‘tribe’ we use our own language amongst ourselves to make ourselves better understood. Think of the jargon sport uses like off-side, tie-break, goal attack, etc..
So, here are a few un-jargoned phrases that might help:
- Self-management: How you look after yourself if you have an illness that lasts a long time or for life, like diabetes or arthritis.
- Which leads to another one long-term condition: as above a health condition, that is likely to last for the rest of your life.
- Medication adherence: Whether you stick to taking any medication or using any medical device as directed by a doctor or other medical professional.
- Et al. : Academics refer to a previous bit of research or study by the name of the person that wrote (e.g. Shaw) it and often write et al. meaning ‘and others’.
- Health team: That’s quite an easy one I guess but just the group of doctors, nurses, etc that look after you.
- Online support tool: In this case Genie is a computer programme you load up via the internet (online) which you can use (like a tool) to get the help or advice etc you need (support).
¹Just in case you’re interested the Shaw et al study that is listed says “In addition to the support provided by family members, interaction with supportive organizations located within communities – such as churches and community centers – may also have a substantial influence on one’s ability to conduct proper diabetes self-care activities.” the full study publication is here