Starting a conversation: diabetes distress

As an accessible, and often more relaxed, healthcare environment, pharmacy can play a vital role in identifying and addressing diabetes distress, writes Leanne Philpott

Talking about the burden of diabetes, director of the Behavioral Diabetes Institute in San Diego William Polonsky says, “The day you develop diabetes, it’s like the universe just handed you a new full-time job that you have to do in addition to whatever else you’re doing. It’s a special job that has a big impact on the rest of your life. There’s no pay and no vacation.

“Diabetes distress is a range of different emotional responses that come with dealing with the burdens of caring for diabetes.”

Associate professor Greg Johnson, CEO Diabetes Australia, explains,Around a third of people with diabetes have significant levels of psychological distress or mental health challenges due to the daily challenges and stigma that they face.

“We also know that a lot of people with diabetes won’t disclose these issues to their doctor. They tend to feel that they’re only interested in their medication and they don’t have time to discuss other issues. Pharmacy can often be a more relaxed setting for people and that’s an opportunity to approach things in a different way and have different discussions.”

Elise Apolloni, pharmacist and credentialed diabetes educator at Capital Chemist Wanniassa, ACT, says, “There are obvious signs to look out for, such as someone who’s teary or overwhelmed. Perhaps they sound a bit vague when you’re talking to them about their medicines, whereas normally they’re sharp. When a person has diabetes, every encounter is a good opportunity to ask ‘how are you doing today’.

“We need to remember that there is quite a large proportion of Australian’s who lead lonely lives. As their local pharmacist you might be the only person who’s actually taken an interest in their wellbeing in many weeks or months, so you need to be ready for the response you might get for showing such care.”

Opening up discussion

“Having a conversation about diabetes distress will help you to better understand the person’s individual diabetes-related problems, how these impact on their wellbeing and diabetes management, and how you can best support them,” says Professor Jane Speight, foundation director of The Australian Centre for Behavioural Research in Diabetes.

In august last year the Australian Centre for Behavioural Research in Diabetes (ACBRD) in collaboration with Diabetes Australia release a new handbook: Diabetes and emotional health. This new resource offers strategies and tools to assist healthcare professionals identify and address the psychological needs of people living with diabetes.

“The resource is equally for pharmacists as it is for GPs and other allied healthcare practitioners, to help them understand the psychological needs of people with diabetes and address communications with people,” A/professor Johnson tells The AJP.

“The starting point is recognising that people are often struggling with their diabetes and pharmacists and pharmacy staff can play a really important support role through recognising that living with diabetes is tough.

“A lot of the basic but useful information and support can be provided in a pharmacy setting. Having a deeper and better understanding of the difficulties that people with diabetes face—in terms of the ongoing stress of living with the condition as well as the constant emotional challenges—and changing the way you communicate with people to recognise that high level of stress or distress is a really good place to start the discussion.

“The start of conversation shouldn’t necessarily be ‘are you taking your tablets’ or ‘how have your blood glucose levels been’; the starting point should be ‘how are you feeling today’, ‘how are you coping with your diabetes’”.

Professor Speight says two other questions pharmacists could ask are: ‘what is the most difficult part of living with diabetes for you’ and ‘how is your diabetes getting in the way of other things in your life right now’.

She notes that it takes time to build trust and rapport but offers the following tips for guiding conversation about diabetes distress:

  • Normalise diabetes related concerns by explaining that many people with diabetes find it quite challenging
  • At first the person might not expect you to ask about diabetes distress, but some people will be glad you asked and showed interest in their experience
  • Ask routinely (levels of distress change over time), but don’t make it an interrogation
  • Use active listening and mind your language (make sure it’s non-judgmental and avoids jargon)
  • Use open-ended questions to elicit a free-flowing conversation
  • Be prepared for their response. For example, if they do indicate a problem, what will you do about it?

“If you suspect the person is experiencing diabetes distress then you can ask them if they would complete a validated questionnaire, such as the Problem Areas in Diabetes scale. However, don’t ask them to complete the questionnaire unless you are prepared to chat with them about their responses and take action should their responses indicate that they need support or a referral,” she advises.

According to the Diabetes and emotional health handbook, severe diabetes distress affects one in four people with type 1 diabetes, one in five people with insulin-treated type 2 diabetes, and one in six people with non-insulin treated type 2 diabetes.

Key diabetes points:

  • Diabetes distress is the emotional distress resulting from living with diabetes and the burden of relentless daily self-management;
  • Greater diabetes distress is associated with sub-optimal diabetes self-management, HbA1c, and impaired general emotional wellbeing;
  • Diabetes distress is sometimes mistaken for, and is more common than, depression;
  • The Problem Areas In Diabetes (PAID) scale can be used to identify diabetes distress and to guide conversations about diabetes distress;
  • Diabetes distress is best managed within the context of diabetes care;
  • Although greater diabetes distress tends to be associated with higher HbA1c, optimal HbA1c is not necessarily an indicator of low diabetes distress.


Strength in numbers

Associate Professor Johnson says, “There’s significant opportunity for community pharmacy to play a bigger part, particularly to be connected to that bigger multi-disciplinary team. This includes the primary care doctor, diabetes educator and the other organisations and resources that a person with diabetes might need to access.”

Part of the assistance that pharmacy can give people with diabetes to help them self-manage and reduce emotional stress is to simply raise awareness of peer support groups.

The Diabetes Peer Support in Australia Study (a national survey of adults living with type 1 or type 2 diabetes) revealed that 70 per cent of people with diabetes find peer support helps their diabetes self-management, benefits their wellbeing, and helps them connect to health services.

Assoc Prof Johnson explains that while the research highlighted the importance of peer support for people with diabetes, it also indicates that any help healthcare professionals, in additional to that of local diabetes organisations, can give in coordinating peer support could be beneficial.

“We need to remind ourselves that people have to live with diabetes every day; they have to make self-management decisions multiple times a day, whether that’s to do with what they’re going to eat, their weight, their level of activity or their diabetes monitoring. Yet the time they spend talking to health professionals, including pharmacists, over a year probably adds up to less than a day.

“The reality is people spend time talking to other people and online getting information. It’s good for pharmacists to be aware of peer support programs, to back them and assist people in accessing these programs.

“There’s a huge variety of programs for different ages, cultural backgrounds and locations, which means that people can find peers with similar experiences and learn a lot from that association. However, we know that only a small proportion of people with diabetes in Australia actually access peer programs.

“In the last 12 months we’ve seen 106 thousand new registrations for diabetes. There are now over 1.25 million Australians who have diabetes. There are huge gaps in education, so the more we can get pharmacists thinking about the role they can play in supporting diabetes education is beneficial,” says A/prof Johnson.


Diabetes screening: extending the role of community pharmacy

Currently a Pharmacy Diabetes Screening Trial is in progress under the $50million 6CPA Pharmacy Trial Program that seeks to assist in the fight against type 2 diabetes.

Capital Chemist Wanniassa, ACT, is one of the 363 pharmacies across the country taking part in the trial. Pharmacist Elise Apolloni explains, “There are three arms to the trial, each testing a different method of screening.

“Wanniassa is part of the group doing just the type 2 risk assessment (AUSDRISK), another group is doing a risk assessment with a random blood glucose reading and the third group is doing a risk assessment and real-time HbA1c measurement.

“For every person that has diabetes, there are two people that are developing it or don’t know that they have it yet; we need to find out who those people are.

“We’re currently recruiting people in the general population who haven’t been diagnosed with diabetes to take the risk assessment to see if they fall into the high-risk category. If anything arises from the screening we have a pathway to refer to their doctor for follow-up.

“Already we’ve identified quite a few people in the high-risk category that had absolutely no idea that they were at risk of developing type 2 diabetes. They were really surprised at the result.

“These are people who potentially wouldn’t have been talking to their doctor about diabetes in a million years until they happened to have this random test. It shows that pharmacy plays a really important role in the preventative space, not just the treatment space.

“By detecting these conditions much earlier we can get the doctor and the wider health system involved for better clinical outcomes.

“The prospect of pharmacy being able to offer HbA1c testing is exciting; you have the potential to find out what’s been going on with people’s blood glucose levels for the last three months and that’s extremely powerful.

“Hopefully the results of the trial will move the profession forward into the protection and screening space.”

Results of the trial are expected at the end of 2017.


Useful resources:

The Problem Areas in Diabetes (PAID) scale questionnaire to help identify and drive conversation about diabetes distress can be downloaded from the

‘Health Professionals’ section of the NDSS website:

A leaflet on peer support can be downloaded from the ‘Publications & Resources’ section of the NDSS website.


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1 Comment

  1. Patricia

    WELL. I was diagnosed with type 2 Diabetes and put on Metformin on June 26th, 2016. I started the ADA diet and followed it 100% for a few weeks and could not get my blood sugar to go below 140. Finally i began to panic and called my doctor, he told me to get used to it. He said I would be on metformin my whole life and eventually insulin. At that point i knew something wasn’t right and began to do a lot of research. Then I found Lisa’s diabetes story (google ” HOW EVER I FREED MYSELF FROM THE DIABETES ” ) I read that article from end to end because everything the writer was saying made absolute sense. I started the diet that day and the next morning my blood sugar was down to 100 and now i have a fasting blood sugar between Mid 70’s and the 80’s. My doctor took me off the metformin after just three week of being on this lifestyle change. I have lost over 30 pounds and 6+ inches around my waist in a month. The truth is we can get off the drugs and help myself by trying natural methods

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