Working in partnership with people with diabetes
This article is based on content provided by Razia Amin, Diabetes Specialist Nurse, UK.
As we have seen, diabetes is a complex and challenging condition to manage. Most people with diabetes have to make daily, multiple adjustments to their self care and behaviour to maintain their blood glucose level within an acceptable range. This can include testing their blood glucose level and injecting insulin several times a day, adhering to drug regimens, and balancing their diabetes treatment, dietary intake and physical activity. Vision loss can impact people with diabetes’ ability to carry out their diabetes self-management independently. In the UK, someone with diabetes may spend less than three hours each year in contact with a health professional. For the rest of the time they have to manage their condition on their own.
Developing patient-centred and collaborative partnerships with people with diabetes
In busy eye clinics, where time is limited, ophthalmic clinicians focus on the assessment and treatment of eye disease. However, all health providers need to also focus on caring for individuals with diabetes, to help them manage the disease and address any issues that may have contributed to the development of their eye disease or vision problems.
Some of the people with diabetes who attend the eye clinic may have been lost to diabetes follow-up and some may not be in any system of health care. It is not unusual for patients to have major gaps in their knowledge or to be unaware of basic information on appropriate blood sugar levels. Identifying these issues presents an opportunity to reconnect patients with the local diabetes team, establish the important link between primary and secondary diabetes care and begin self care support.
Education and support are essential to help increase an individual’s knowledge and understanding of diabetes and to develop the skills and confidence they need to take control of their health. Health education is delivered in different ways across health systems but working in partnership with people with diabetes is essential. Below we outline three approaches to consider.
Self-care structured education programmes
Self-care structured education programmes are used in well resourced settings to support patient. Some of these are now provided online. People with diabetes and their families receive a standardised training with a clear underlying philosophy and curriculum from trained educators with quality assurance of teaching standards and a regular audit of programme outcomes. There may not be a suitable single course for areas with diverse populations or wide variations in language and culture.
Peer led education and support
Peer led education and support can also complement educational approaches used in the diabetes or eye clinic. Peers who manage their diabetes safely and successfully and are willing to share their experiences to help others are likely to be a valuable resource, from both an educational and motivational perspective. In some settings peer support is being extended through the mobile phone and email, although this depends on patients’ access to technology and digital capabilities.
Sharing experiences about managing diabetes, India © Dr Mohan, CC BY-NC-SA 4.0
Dedicated self-care educator in eye clinics
Having a dedicated self-care educator in eye clinics allows people to access diabetes education, advice and support, discuss any specific difficulties they are experiencing and improve their diabetes self-management skills.
Self-care educators undertake consultations with patients on a one-to-one basis with further involvement from family members, friend or carers where appropriate. Ideally, these sessions are fitted in between their eye assessments, reviews and treatments to avoid adding extra time on to already lengthy clinic appointments.
The main focus is initially around getting to know each individual and gathering information. As well as their medical history, other useful information includes their social situation, any psychological issues, their current lifestyle and their medication and treatments. This can take some time depending on the person, their circumstances and difficulties being experienced.
The self-care educator works together with the person with diabetes to:
- Assess their social circumstances - family, relationships and support networks
- Identify their concerns about their diabetes management
- Assess their understanding of the development of diabetes complications, their motivation to improve their diabetes, gaps in their knowledge and skills and their ability to care for themselves
- Discuss lifestyle issues around dietary intake, meal times, activity levels, weight, employment and work schedule, driving, smoking and alcohol intake
- Discuss their blood sugar management - whether they experience any hypoglycaemia and how they manage it, whether they carry out home blood glucose monitoring, what their typical blood glucose patterns are and the times of day blood glucose levels are too high or too low
- Examine the treatments they are taking and any side effects being experienced, if prescribed treatment is taken regularly, the practical aspects of administering insulin, the suitability of equipment, their ability to administer correct doses if vision is impaired, their injection technique and whether injection sites are lumpy.
Following this assessment, any proposed education or interventions are tailored to the individual needs of each patient. Realistic and clinically meaningful goals are set jointly, involving the patient in the decision-making process. Where possible the plan of care should be shared between health professionals too.
The goals may involve lifestyle changes and adjustments to medication. Lifestyle modifications and behaviour change to improve health can be difficult and a real challenge for people. Patients who choose their goals are much more likely achieve and maintain them.
For people with type 1 diabetes who inject insulin, it is a good idea to focus on the practical aspects of administering insulin and developing problem solving skills. This helps individuals to identify self-management solutions for different situations. For example, what to do if their blood glucose is too high or too low.
A high proportion of people with type 2 diabetes are overweight and they often don’t understand why their blood glucose remains high when they don’t consume any sugar. They may be unaware of the impact of uncontrolled risk factors on the development of their eye problems. So for people with type 2 diabetes (not on insulin) the focus should be to help them to understand their diabetes, its risk factors and complications, and on helping them to make healthy food choices and lead a healthy lifestyle.
Beyond the eye clinic, many people with diabetes may prefer to link up with their local diabetes associations or communities.
What are the self management support schemes available in your eye clinic? Is it feasible to introduce these services?
© London School of Hygiene & Tropical Medicine CC BY-NC-SA 4.0