Despite all the advances in medical science and technology, there is still no cure for diabetes. A person with diabetes has to live with it and manage it all their life. The challenge, of course, is being diligent and consistent with diabetes management. Type 1 diabetes is challenging to manage because it is so comprehensive. Research shows that the adherence rate for chronic conditions is about 50%. Despite extensive studies and research, that number has not changed significantly over the past 3 decades.
What is adherence? How does it apply to people with type 1 diabetes? How can a person with type 1 diabetes improve their adherence? And how can mental health professionals help? These questions were answered by Dr. Katherine Fan, a psychiatrist and pediatrician, at the 2016 Asian Outreach Day. Dr. Fan spoke with attendees about the factors that affect a person’s short and long-term dedication and commitment to managing their diabetes. Here’s a recap of her talk:
What is Treatment Adherence?
Adherence is the active, responsible, and flexible process of self care and self management with a goal of overall health and wellness. An adherent patient strives to achieve good health by working in close collaboration with health care staff, instead of simply following rigidly prescribed rules.
In the context of type 1 diabetes, adherence can also be known as “collaborative diabetes management”, “patient empowerment”, or “self care behavior management”. It can be useful to break down diabetes adherence into a number of areas:
- Glucose monitoring
- Administration of medication / insulin
- Dietary intake / carb counting
- Physical activity
- Follow up visits
This may help the patient, medical care providers, and support system prioritize and focus on which parts to work on.
Also, it is important to distinguish between Adherence and Compliance. Compliance implies a paternalistic relationship between and patient and his/her doctor. The patient takes a passive role in diabetes management, simply following doctor’s orders and doing what they say. On the other hand, adherence is more of a partnership between a patient and his/her doctor, as well as his/her support network. In fact, the patient is an active participant in planning and management.
Factors Impacting Adherence
What makes a person with diabetes more or less likely to adhere to their diabetes management plan? There are 4 main types of factors that diabetes adherence:
Treatment and Disease Characteristics
Complexity of treatment: The more complex the regimen, the lower the adherence rate. For example, if a patient has to take 10 different kinds of medication, 4 times per day, it is difficult to integrate this routine into daily life.
Duration of disease: The more chronic the illness, the lower the adherence rate. This may seem counterintuitive, but patients who have been diagnosed longer actually tend to have lower adherence rates than those recently diagnosed. Managing a condition over long periods of time may lead to a more casual attitude, or it may lead to burnout.
Delivery of care: Diabetes care can be delivered a number of ways: via a multidisciplinary team, a single general-care provider, or community treatment, to name a few. Research has shown that patients with diabetes seen specifically for their diabetes received more counselling on diet and adherence than patients with diabetes seen for an acute illness.
Age: The teenage years tend to be hardest time to stick to a diabetes management plan. In contrast, parents of young children with diabetes are more likely to be adherent.
Self-esteem: Research has shown that high levels of self-esteem are related to high levels of adherence to physical activity regimens, adjustment of insulin doses and dental self-care
Self efficacy: Self-efficacy is defined as an individual’s belief in their ability to succeed specific or accomplish a task. A healthy sense of self-efficacy can play a major role in approaching goals, tasks, and challenges. The more a patient is able to advocate for him and herself, the better the outcome.
Stress: Stress and emotional state is also correlated with treatment adherence. The less stresses a person experiences, the more likely he or she will adhere to diabetes management.
Comorbid conditions: A comorbid condition is one that occurs at the same time as another illness or condition. Comorbid conditions such as depression, alcohol abuse, eating disorders, and others can adversely affect diabetes adherence. This effect is not limited to mental conditions: physical comorbidities also tend to lower the adherence rate of diabetes.
Patient-provider relationship: The better the relationship between a patient and his or her provider, the higher the patient’s adherence rate will be. Patients and providers who communicate with each other tend to have improved relationships.
Social support: The benefits to have a social network for a person with type 1 diabetes are well known. Greater social support means better levels of adherence. For children and teens with type 1 diabetes, great parental involvement also means better levels of adherence.
Stressors:The more stress a person has in their life, the harder it is to prioritize and manage diabetes
Conflicts: People with diabetes are as multifaceted as everyone else. Frequently, they are called upon to choose between giving attention to diabetes self-management or to some other life priority. They can face time pressures and social pressures during school events, work events, family events, holidays, and more.
Lifestyle factors: A person’s lifestyle can directly affect their diabetes adherence levels. Are they sedentary or active at work? Do they work long hours? Do they travel a lot? How much time do they spend in front of the television? Do they have a hobby? Different circumstances require individuals to adjust and maintain their diabetes management.
Socio-economic status: The economically disadvantaged and ethnic minorities may find it particularly challenging to visit healthcare providers or to live a healthy lifestyle. They may have limited access to fresh fruits and vegetables, small living spaces. Their schools may not provide opportunities for physical activity. What’s more, financial constraints may prevent them from going to a gym. Those factors, combined with their local climate, may make regular exercise challenging.
The Diabetes Adherence Team: What can we do?
There are four kinds of players on any diabetes management team: the Patient, the Parents (or family/friends), the Physician, and the Environment. All players have a role to play in diabetes adherence. When each “player” contributes in a positive way, it leads to better adherence and better outcomes. Here are tips on how each team player can work to enhance adherence and wellness:
It takes a team to manage diabetes, but adherence starts with the patient. As the person with diabetes, you’re going to be living with your body for a long time, so take care of it! Here are some things the patient can do to make diabetes adherence easier:
- Be informed and understand your condition. Understand what it does to your body, and understand the complications that can occur if one does not manage the condition and stick to the plan.
- Identify your strengths and future goals. Don’t see diabetes as something that defines you, but something that is a part of you. You cannot change it but you can manage it.
- Stress proof your life. Work on areas such as sleep, nutrition, exercise, hobbies, mind-body exercise, healthy coping strategies, and more. Also, develop a support network of family, peers, school, religion, and/or support groups.
Parents (and family) play a huge role in enhancing adherence. Here are some things parents can do to help their child with T1D:
- Understand the developmental needs of your child and recognize where they are. Remember, each child is different! At any given age, a child may be a different levels with respect to cognitive, motor, social-emotional, and physical skills.
- Be informed and stay involved. Invest in your relationship with your child! Additionally, help your child be informed and involved. Help educate your child’s school, as well as caretakers, friends, and family.
- Balance “take control” and “letting go”. We all want to be there for our kids, but we want our kids to take responsibility and be independent so that when they leave home, they can take care of themselves.
- Create a supportive home environment. Avoid judgement words such as “good” or “bad” sugar/A1C. Instead, use phrases like “in or out of range”.
- Foster a positive attitude about the condition.
- Model self care. Kids learn by watching!
- Focus on incentives, not threats or fear tactics. Consequences are for behaviors that you want to stop, while incentives are for behaviors that you want to foster.
- Don’t be shy about asking for professional help!
Physicians play an important role. A physician who can help enhance adherence is one who:
- Keeps it simple and simplifies treatment regiments as much as possible
- Makes sure patients understand the consequences of non-adherence
- Connects with the patient in a way they understant
- Enhances patient communication via phone, text, etc..
- Leaves bias out of the relationship and avoids judgement. Patients already feel shame and guilt, and when they feel judged, it negatively affects the doctor-patient relationship.
Some environmental factors are difficult, if not impossible, to control, so focus on things that you can control. For example, you may not be able to enhance access to health care, but you can provide diabetes awareness and education. You can educate not only yourself and your family, but also the broader community. Parents can help educate their children’s school teachers and friends. Adult patients can start support groups online and in real life. Technology can also improve diabetes awareness and education.
The role of Mental Health Clinicians
How can mental health clinicians help patients achieve overall wellness?
- They can support the patient and the patient’s family, not just during diagnosis, but throughout their journey.
- Acceptance is the first step towards adherence. Mental health clinicians can help patients work on accepting their condition and coping with it.
- Mental Health Clinicians can help the patient process some of the emotional factors that come with diabetes: anger, fear, guilt, shame, stress, sadness
- They can facilitate communication and conflict resolution, between you and parents and friends, between doctor and patient
- They can help identify other emotional disorders that can complicate diabetes management, such as depression, anxiety, eating disorders, or substance abuse.
Mental health clinicians can provide treatments such as cognitive behavioral therapy, motivational interviewing, behavior modification plans, or family therapy. Diabetes affects the mind as well as the body. Mental health is an important step towards the journey to your best self. Never be afraid to ask for help from a mental health professional!