Can I tell you a story about a little diabetes outreach program for people living with mental illness? My dietitian partner and I were approached by our director to work with our local Canadian Mental Health Association (CMHA). They were looking for “diabetes education” for their clients attending the “RSVP clubhouse” – a day program in the community. We jumped at the chance to do something different recognizing the need for diabetes education in this high risk population. Key factors to making this work were our passion and flexibility for the program; a flexible schedule with dedicated time for program development and offsite work; and our ongoing partnerships with the CMHA coordinator and case manager.
We called ourselves the Parachute Diabetes Program. We literally “dropped in” once a month to provide a basic discussion about healthy living involving food. There were 20 – 25 adult participants with a variety of mental illness and at risk or diagnosed with diabetes. The RSVP day program had a community kitchen, “living room” and smaller offices. We initially engaged clients using Diabetes Conversation Maps while they enjoyed a healthy snack of fruit or low fat cheese. “Conversation Maps are new learner-driven education tools that have been developed to empower individuals to improve their health outcomes. While the tools were originally developed for clinical settings, the Extension health outreach program uses Conversation Map techniques to teach diabetes awareness and healthy eating in community group settings” (Grenci, 2010).
The biggest draw to our program were booked monthly cooking classes using a rice cooker to demonstrate “one pot meals”, as access to food, cooking devices and food storage was a challenge for clients. Clients would take the rice cooker home, recipes and food from the participative cooking lesson. Eventually we provided booked 15 minute time slots for private diabetes related conversations. Outcomes were informally assessed with a one question survey as suggested by the CMHA staff, i.e. “What do you like about the diabetes team coming to your clubhouse?” The response was wonderful… “We like it when the diabetes team -red haired girls- bring us healthy snacks, do cooking and talk about food”. The best outcome was seeing a new BIG bowl of fruit on the table beside the old vending machine! Simple, yet effective.
It is pivotal that we “access the inaccessible” people living with diabetes for diabetes self management education (DSME). The stark reality is at the ” time of diagnosis half of those with type 2 diabetes will already have complications”. There is a plethora of evidence that good diabetes management reduces the risk of complications, which is why it is important to make every effort to reach the “non–attenders” (Thomas, 2012). The IDF supports that “DSME has been proven effective to improve clinical outcomes and quality of life”, (2009). Self-management support, including self-management education, is the cornerstone of diabetes care in the Chronic Care Model. Self-management education goes well beyond didactic disease-specific information. It is a systematic intervention that involves active patient participation in self-monitoring (physiological processes) and/or decision making (managing). Self-management enables the person with diabetes to take an active role in managing his or her own care through problem solving and goal setting, which can be facilitated through the use of motivational interviewing techniques (CDA 2013). The CDA 2013 clinical practice guidelines reinforces that diabetes care should be organized around the person living with diabetes.
The purpose of this article is to highlight and discuss the potential of the diabetes educator role in providing innovative, client focused, evidence based, outreach programs for diabetes self management education of individuals under challenging living situations.
What is Outreach?
According to Merriam’s dictionary the noun “outreach” is “the activity or process of bringing information or services to people or the act of reaching out, the extent or limit of reach”; and the extending of services or assistance beyond current or usual limits (Online, 2014). The Department of Health and Human Services defines outreach as “reaching out to people who are not using any of the services provided by your organization or health centre. Educating people about your organization’s services or messages” ; and the concept of “in reach” as reaching out to people who are using the services provided by your organization or health centre, but who are not using your diabetes prevention and control services (2008, pg 1-4).
Who are the Target Populations?
An article by Thomas (2008) of the United Kingdom really spoke to me about the target populations for outreach in her description of “non-attenders”. Those who do not attend appointments or classes.
Who are these “non attenders?” According to Thomas (2012), these groups of individuals are also called “hard to reach, minority, disadvantaged, and vulnerable “(See Box 1).
I am sure there are specific groups of people with diabetes who come to your mind as you read this description.
We find these individuals are admitted to hospital more often than attenders; they have other serious co morbidities putting them at great risk for acute and chronic diabetes complications; and providing a challenge to perform self management of their diabetes.
Think about your own practice population. Who are the hard to reach groups within your area? This could be a starting point for identifying groups of people who are unable or choose not to access routine services. Other ideas include capturing people with diabetes who are admitted to hospital. Approximately 1 in 10 admissions to hospital will have diabetes. Those who are admitted frequently may have been ‘missed’ from routine care or have difficulty accessing it. An audit of your ‘frequent flyers’ may highlight those that do not attend the practice. It is important to engage with the health visitors, district nursing teams, the diabetes specialist and other community services e.g. pharmacists, and agencies including mental health, social services and outreach services. This may give an insight to the number of people in your area that require service provision who are potentially being missed. (Thomas, 2012).
Why do People Not Attend?
There is a myriad of reasons why people do not attend existing DSME programs. Those factors that come to my mind include: lack of self referral, low literacy, language and communication difficulties, low socio-economic status, mobility, cultural and religious differences, inability to navigate the system and limited access to services.
Socio economic deprivation is strongly associated both with risk factors for developing diabetes and with the risk of serious complications from it (Thomas, 2012). We know that people with learning disabilities and those with mental health problems may have impaired cognitive and reasoning abilities, and/or co-morbidities and physical disability, making access to routine health care services more difficult. We also know that this high risk population has a much higher prevalence of diabetes making them a key outreach group. Furthermore, people are living longer as the wave of the “silver tsunami” begins to crest. The number of seniors with diabetes is predicted to explode in the next 15 years. Consequently, more people will be living alone, in long term care or residential care where diabetes care is often substandard. How do we reach out to them? Or have them or a caregiver reach out to us? Our primary care providers are overwhelmed. General practices have so many patients on their roster with chronic diseases and as a consequence have become so ‘stretched’ it is difficult to focus on people that cannot access routine care (Thomas, 2012).
Where Do You Start?
One must remember there is no one single best program or approach for DSME.
There are two fundamental guides to outreach programs which you may wish to utilize: International Standards for Diabetes Education and the Capacity Building for Diabetes Outreach: A Comprehensive Tool Kit highlighting the use of Transtheoretical Model of Change (TTMC) to assess the readiness for change. “By assessing your organization’s current stage of change, you can set more realistic objectives for developing effective programs and services for diabetes prevention and control in your target community” (Dept of Health and Human Services, 2008, p. 2-6).
As certified diabetes educators, we should be very familiar with the evidence based standards for diabetes education including the components of structure, process, and outcomes with specific indicators for program development, implementation and evaluation which can be found on the International Diabetes Federation (IDF) website. In review, the Structure Standard will provide a framework for a diabetes service; the Process Standard describes the process of Diabetes Self Management Education (DSME) and the steps required in preparing for, implementing and evaluating diabetes education; and the Outcome Standard: describes the overall objective(s) of DSME (IDF, 2009, p. 10).
The Department of Health and Human Services (2008) provides an excellent toolkit of capacity building strategies to support diabetes outreach programs. I suggest downloading and reading this toolkit prior to starting your program. The authors recommend strategies such as a community based approach which is intended to be flexible so that community-based health centres and other organizations with established community relationships actively participate in designing and tailoring their interventions. Direct community input is encouraged. Community members can help assess needs and participate in coalitions, advisory committees, and partnerships. Further to this, participatory action is encouraged as a means that community members actively participate in planning, conducting, and evaluating a program. In this way, they “share ownership” of the program. To meet this goal, community members must be included in the entire process. They should help develop project goals and objectives, identify intervention strategies, develop survey questionnaires, conduct activities, and evaluate program progress (Dept. Health Services, pg. 2-3). It is important to develop and solidify partnerships. It is not necessary for all partners to have a strong working knowledge of diabetes prevention and control. Instead, they may have trusted access to the population you are trying to reach or other resources to offer. Examples of non-traditional partners are grocery stores, movie theatres, recreation departments, restaurants, schools and services clubs (Thomas, p. 165).
I had some recent experience with development of a formal partnership amongst four different agencies. We consulted our risk management department due to the breadth of the project. They recommended a Memorandum of Understanding/ MOU in order to clearly define each partner’s roles and responsibilities. A MOU is a written document that clearly spells out the terms of the partnership, including expectations, time period of partnership, communication type and frequency, referral and follow up procedures, payment mechanism; and methods of evaluation Dept. of Health, 2008). If you are unfamiliar with an MOU, your leadership or risk management team should be able to assist you in development of this document.
Ideas to Enhance Access
One of my frustrations is lack of self-referral to programs, or need for a referral at all. Yes we need to monitor client types; demographics and maintain statistics such as volumes for funding purposes. However, lack of self referral can be a deterrent for the non attender population particularly if there is no primary health care provider to complete a referral, or the literacy level does not allow completion of the paperwork. I believe there are other ways to support the non attenders to access programming; and we can assist them with this process.
Fox (2006) reported that focus group findings highlighted the unique role nurses play in the delivering of care in client’s private homes. Findings called for the development of diabetes tools specific to the needs of home care clients, new models of diabetes home care provision and diabetes prevention strategies in the community.
I cannot stress enough that services need to be tailored to the needs of disadvantaged groups and should be flexible. If it is not working, do not give up, try another strategy according to your populations’ feedback. Perhaps peer mentoring would be helpful. A person living with depression and diabetes will be able to articulate DSME from a unique viewpoint. “They can help provide the care, support and follow-up of knowledge and life experience and are able to target information with sensitivity and respect” (Thomas, 2012).
See Box 2 for other facilitators to improve access (Thomas, 2012).
Successful Outreach Programs
Here a few innovative diabetes outreach programs which could be adopted for a variety of target populations and community settings while utilizing the IDF Diabetes Education Standards framework and the Capacity Building Toolkit for Diabetes Outreach Programs.
1. Ethnic Uniqueness in Diabetes: The Cultural Kitchen.
What is more universal than food? Yet, we may know little about ethnic cuisine within typical diabetes education centres. The “cultural kitchen” is a very simple idea which reverses the role of educator and patient with diabetes. This team came up with the idea of organizing cultural kitchens as a way to meet clients’ needs and increase the team’s cultural competence. They would be learning about food and health beliefs from the experts — the clients themselves. The nurse recruited clients for the program, particularly from communities at high risk of developing diabetes established partnerships with Community Health Workers in other public health programs. The discussions focused on various health and spiritual beliefs related to chronic disease. This sharing of knowledge with us changed the power dynamic tremendously. The experience was humbling and powerful, opening a window into the newcomer experience that helped us fine-tune the design of the events. (Dove, 2008, p. 9.). Think of all the potential to educate ourselves about ethnic cuisine in the cultural kitchen, and provide improved DSME to people with diabetes.
2. Media & Technology: Try it… You Might Like it.
The world has become very tech savvy, including our health care system and people living with diabetes. We have progressed from telephone based interventions for insulin adjustments, to web based downloading of metabolic data for insulin pumps and SMART phone apps for carbohydrate counting, to name a few. Yes, we may be sceptical and believe that target populations will have limited access to technology. However, I believe it is time to re think our old views and become change agents using technology to provide outreach in an innovative way.
The Prairie Health Matters (PHM) used a random list of program clients to conduct a telephone survey to determine the reasons for not attending their program. Non-attendees were more likely to be working full-time than attendees. The proposed response of the PHM staff to these findings included changing appointment times and how they interacted with clients, including developing a website and using more e-mail communications (Temple 2009).
Telehealth is the use of electronic information and telecommunications technologies to support long distance clinical health care, patient and professional health-related education, public health, and health administration. Technologies include videoconferencing, the Internet, store-and-forward imaging, streaming media, and terrestrial and wireless communications (Fitzner, 2013) See Box 3 for a summary of best practices for telehealth delivery of DSME.
The CDA supports the use of telehealth technologies as part of a disease management program to: a) Improve self-management in under serviced communities, b) Facilitate consultation with specialized teams as part of a shared-care model (2013).
In conclusion, my own formula for outreach is to go to where the people are…. outside of your office! Try something new. Feel passionate about what you are doing!
Get to know your non attenders -are they housebound seniors? Rural farmers? High school students? Lower your expectations about YOUR OWN GOALS AND AGENDA. Be present with the client while acknowledging their own SMART goals – however small they may seem. Start slow to develop relationships and assess current level of knowledge through conversations… using motivational interviewing techniques. An INTRA PROFESSIONAL approach is essential – work with a diabetes team partner and key stakeholder from your target agency. Flexibility for scheduling, buy in from your leadership team and support for devoted time for outreach development; implementation and evaluation is KEY! Link with colleagues working with higher risk individuals and see if you can develop partnerships that way i.e. “parachute” into their already existing outreach programs. Get to KNOW your population.
The possibilities are endless… Just do it! Put that bowl of fruit beside the vending machine!
Canadian Diabetes Association Clinical Practice Guidelines Expert Committee. (2013). Canadian Diabetes Association 2013 Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada. Canadian Journal of Diabetes; 37(suppl. 1):S1-S212.
Department of Health and Human Services, Centres for Disease and Control and Prevention, and National Institutes of Health National Diabetes Education Program. (2008). Capacity Building for Diabetes Outreach: A Comprehensive Tool Kit for Organizations Serving Asian and Pacific Islander Communities. Accessed online: <http://ndep.nih.gov/media/capacity-building-toolkit.pdf> Sept 1, 2014.
Dove, L., Friedrich, T., and Cuming, C. (2008). Cultural kitchens: changing the power balance. Canadian Nurse, 104(2), p.9-10.
Fitzner, K. and Moss, G. (2013). Telehealth- An Effective Delivery Method for Diabetes Self Management Education? Population Health Management, 16, p. 169-177.
Fox, A., Monro, H. and Brien, H. (2006). Exploring Diabetes Home Nursing Care: A pilot study. Canadian Journal of Diabetes, 30(2), p. 136-153.
Grenci, A. (2010). Applying New Diabetes Teaching Tools in Health-Related Extension Program miming, 48(1), p. 6.
International Diabetes Federation. (2009). International Diabetes Education Standards 3rd ed. Accessed online: <http://www.idf.org/files/idf_publications/international_standards_for_diabetes_educaiton_EN/index.html#/3/zoomed 3rd edition> Sept 10, 2014
Merriam-Webster Dictionary. Merriam-Webster.com. Accessed online: <http://www.merriam-webster.com/dictionary/outreach> Sept 9, 2014.
Temple, B. and Epp, D. (2009). Evaluation of a diabetes education program’s non-attendees: The program response. Canadian Journal of Diabetes, 33(4), p. 375-380.
Thomas, S. (2012). Diabetes – targeting the non-attenders. Practice, 42(2).
Venditti, E., Kramer, M. and Kaye, M. (2013). Comparative effectiveness of peer leaders and community health workers in diabetes self management support: results of a randomized controlled trial. American Journal of Preventive Medicine, 44(4), S339-S345.