For those of you who have been part of our community over the years, you will know about how I started the services and have been on the journey with us. Others may have only joined us recently. In 2012 I won a grant to develop and evaluate our services. The grant has now ended but we are continuing to support you in our Facebook groups and via the blog, as volunteers. Today I am sharing the results of our evaluation to show how powerful online communities can be.
Offering services and creating communities online and in social media is no longer a choice, but a must. People are gathering daily on the most popular social media sites such as Facebook, and searching for help and information about their conditions and health. Health care providers must also gather in these online spaces and connect with our communities.
I founded Diabetes Counselling Online in 2001, and we are a leader in the development of online counselling and health services. A not for profit, we received funding from the Department of Health through the Chronic Disease Prevention and Service Improvement Fund in 2012, a program designed to support activities that address the rising burden of chronic disease.
The objective of the Chronic Disease Prevention and Service Improvement Fund was to support targeted action related to chronic disease prevention and service improvement, particularly within the primary care and community sectors to:
- Reduce the incidence of preventable mortality and morbidity;
- Maximise the wellbeing and quality of life of individuals affected by chronic disease from initial diagnosis to end of life;
- Reduce the pressure on the health and hospital system including aged care; and
- Support evidence-based best practice in the prevention, detection, treatment and management of chronic disease.
The following priority areas were identified to achieve the program’s objectives and translate its key principles into practice:
a) Prevention across the continuum
b) Early detection and appropriate treatment
c) Integration and continuity of prevention and care
Diabetes and Depression
The link between depression and diabetes has been shown to lead to significant increases in morbidity and mortality in people with diabetes (PWD), both type 1 and type 2. A study by Reddy et al in 2013 in a diabetes service, recruited 184 patients consisting of type 1 (n = 51) and type 2 (n = 133) PWD who completed the Problem Areas in Diabetes (PAID) scale, the PHQ-9 depression scale from the Patient Health Questionnaire, the Kessler-10 psychological distress (K10), and the Short-Form Survey (SF-12) instruments. Participants also had their Glycosylated haemoglobin (HbA1c) levels measured on the day of recruitment, which were recorded from the case notes. The researchers concluded that for PWD, Diabetes Mellitus- distress (DM-distress) as measured by the PAID correlated significantly with impaired glycaemic control and that both past and current depressions are independently associated with DM-distress.
Recent research by Fisher et al (2014) has shown that the symptoms of depression for people diagnosed with type 2 diabetes can be significantly reduced through interventions for DM-distress. Their study highlights that much of what has previously been labelled as co-morbid depression may in fact be the result of living with diabetes, which can be stressful and difficult to manage. The chronic nature of the illness, the potential for complications and even death may take its toll on those diagnosed and their carers and loved ones.
In an interview at the American Diabetes Association conference Prof Lawrence Fisher, Professor of Family and Community Medicine at the University of California, San Francisco said that “because depression is measured with scales that are symptom-based and not tied to cause, in many cases these symptoms may actually reflect the distress that people are having about their diabetes, and not a clinical diagnosis of depression.”
The power of online support
Three interventions that have been shown to effectively address DM-distress are:
- Taking part in an online diabetes self-management program,
- Taking part in the online program and having individual assistance to problem solve issues related to DM-distress and
- Being provided with personalised health risk information and being sent diabetes related information through email.
As part of this grant we set up a series of groups on Facebook based around various issues seen by our counsellors in practice as being relevant: Pregnancy and Parenting with Diabetes, Aussie Men with Diabetes, Parents of Kids with Diabetes, Rural Diabetes and, Diabetes Weight Matters. Groups are moderated by the counselling team and peers. Groups have real time chats facilitated by a DCO counsellor and/or peer volunteer, as well as general discussion via members being able to leave posts and others respond to these posts, such as the following (all names have been changed).
“Being in a small town of 4000 people it’s hard to get help with diabetes but I have a good doctor plus you guys so I’m am doing good hopefully we can learn together and get better people in small town don’t have the advantages of people in big town like Sydney but we try my doc is pretty good but I need this site to supplement my treatment I think I am doing ok my doc thinks I am so hopefully I can help you guys and gals out there in Facebook land” – Bruce, aged 55, Men with Diabetes Group
“I am in a phase of eating the wrong foods (a lot of chocolate), got out of routine with my exercise, feeling a little less motivated than what I have been (already recovering from a bad bout of depression earlier in the year and the loss of a close friend in April). My blood sugar has been riding a roller coaster this past fortnight, generally due to my poor choices, but today I am just feeling not good enough!! Does anyone else feel that way when they don’t feel on top of their diabetes???” Gina, aged 59 Weight Matters Group
As leaders in the online counselling space DCO engaged in social media when it emerged, initially to offer links and connections back to the DCO website. Facebook and other social media was seen as a way to drive people back to the DCO site, but has clearly become a service extension with 1-1 counselling occurring via personal messages on Facebook, within groups and on the main DCO Facebook page.
DCO has around 15000 followers on the main Facebook page to date, which has tripled across the life of the project and over 5000 members across our groups. Groups were started as a way to offer a more private and specific place for different aspects of diabetes to be discussed between peers, with guidance of the DCO team. Issues such as dealing with pregnancy management and emotions, how to cope with a young child with diabetes, accessing services in rural areas, erectile dysfunction, stress, anxiety, diabetes burn out, depression, weight loss and emotional eating, are some examples of discussion topics that occur.
“Again thank you for being available and for your encouraging words. Although hesitant at first to “put my problems out there” I do actually feel better by just telling someone, anyone about myself. I don’t find it easy to vocalise and share with others, even family. Words on paper or written come so much easier for me.” Eileen, Aged 35, Pregnancy and Parenting group
“It is so good to hear stories like yours. I know in my mind that one day he will be fine on his own but in my heart I feel like I will never be able to stop worrying. I wake up at least 2xs a night to test him now and wonder if he will be able to do that one day for himself. I secretly hope that they will come up with a safe and affordable way for people on their own to make it through the nights. Am I crazy or do these thoughts cross your mind too?” Alison, aged 34, Parents of Kids with Diabetes group
Facebook has become a strong part of the DCO service and we have responded to your requests to offer our education and counselling from within Facebook itself. This includes groups which offer discussions between people in similar situations and an opportunity to develop a social identity within that group. Not only are peer connections made, but the DCO team which includes 2 diabetes educators, 2 mental health counsellors, a dietitian and a pharmacist, offers insight and support as part of counselling and education services. This suggests social media as a valid and useful tool for integrative practice and one which should be further explored.
The online counselling services provided by DCO have been shown to be of value in engaging people with diabetes in better self-management, early detection of problems associated with diabetes care and management and better engagement with their multidisciplinary team.
“Basically I have been having a hell of a lot of trouble not getting answers from them, the Diabetes Educators and the Endocrinologist. I got the assistance I needed from DCO. When I get up in the morning my BGL is 15-20 in the morning. That impacts on the rest the day. I was not getting help from anybody. The Endo kept telling me just lose weight, you’re not really type 1 your type 2. I was reading the more insulin you take the more weight you put on. You people were talking about 3 things ‘The dawn phenomenon’…my Endo says to me you have been having hypos every night. He also said my cortisols are out of wack. DCO were talking about these things and mentioning them and were discussing them. In Australia you people are the only ones.(p02)”
Counselling hours have continued to grow as a result of the funding provided to the project. In particular the change in group counselling hours through the Forum and the Facebook pages has been 213% and 312% respectively. The results of the recent evaluation show that the people using DCO services experience high rates of DM distress with more than 50 % of respondents agreeing that the majority of problem areas in diabetes were a concern for them. This means you guys out there are often doing it tough.
Many people reported multiple areas being of concern, some as high as 10 problem areas. This finding was confirmed during telephone interviews. Participants expressed growing concerns were the key drivers that led them to seek help from DCO, many of them reported using DCO services as an observer before registering and receiving counselling or access to the closed Facebook group counselling and support pages.
“The fact that I can respond. I might see something and think about it and come back later and then ask a question and then I get a response it is really good. I am in a rural area and it is hard to get to the doctor and there aren’t many services available locally and it is expensive to go to the doctor. It is good, I can ask the question and get it answered and I don’t have to save it up to ask for the doctor. (p08)”
By triangulating data sources, the evaluation team at *Decision Support Analytics were able to identify that online email counselling is beneficial to the people receiving it. It helps with managing diabetes, improving self-management and addresses some of the Problem Areas in Diabetes. People seek email counselling often as a result of a crisis or worsening outcomes related to their diabetes. Online group counselling through the closed Facebook sites is beneficial and well received. This too, helps with the Problem Areas In Diabetes. People accessing all areas of online counselling and support are more likely than normal to be experiencing DM-distress and many report having multiple Problem Areas In Diabetes.
“It was really helpful, I needed support at the time. It was important for persevering; I think I was going through burnout at the time and it was really good for helping with that. I was able to debrief, diffuse those emotions. It really helped to manage the emotional side of diabetes. (p05)”
DCO has continued to innovate, we have been a pioneer in online counselling and as the online environment has continued to evolve in Australia, DCO has continued to evolve with it. Our current work with mobile apps and ebooks will ensure we remain the leaders in online counselling and support for people with diabetes with an integrative approach working alongside traditional services.
We are very proud of the work we have done and are grateful for the support of the Commonwealth over the past 3 years. I want to personally thank each and every counsellor and volunteer who have given their all along the way. We look forward to continuing to communicate and connect, helping you find a happy healthy life with diabetes.
*Evaluation carried out by Decision Support Analytics http://www.decisionsupportanalytics.com.au