Mental Health Issues in Diabetes Conference
Summary of Workgroup 1 Discussions, Conclusions and Recommendations
Submitted by Jill Weissberg-Benchell, Ph.D., CDE Workshop Chair
The goal for workgroup 1 was to address the psychosocial issues relevant for children and adolescents with type 1 diabetes, and to make recommendations regarding how to improve the psychosocial support available to children and families.
- 1. DEVELOPMENTAL CONSIDERATIONS
With respect to families with preschoolers, our team highlighted the following issues that a mental health provider should be familiar with and should offer anticipatory guidance to families about:
Fear of Hypoglycemia, and Struggles with Eating (timing, amount, predictability in intake). – given the fact that preschooler’s appetites vary greatly from day to day, it is difficult to predict how much and when a child will want to eat. One consequence of this is an increased risk of low blood sugars. The fact that preschoolers are less able to communicate how they feel to their parents also plays a role in this increased risk as well as a role in increased parent anxiety.
With respect to families with elementary age children, our team highlighted the following issues that a mental health provider should be familiar with and should offer anticipatory guidance to families about:
Sharing the diagnosis with others, negotiating peer relationships, and preventing diabetes from interfering with daily activities. School-age children are beginning to expand their known-world and are also aware of how they are the same and different than their peers. In addition, this is the age where the concept of “fairness” is paramount, and diabetes is not fair.
With respect to families with adolescents, our team highlighted the following issues that a mental health provider should be familiar with and should offer anticipatory guidance to families about:
The increased influence of the peer group, the desire for independence while still needing supervision, the opportunities to engage in high risk behaviors, the increased risk for depressive symptoms, and the negative impact of family conflict. The rapid changes in adolescent physiology (hormones) and psychology (brain development) offer opportunities for both crisis and positive change. Teenagers are capable of engaging in good judgment and decision making, but that does not mean that they always engage in these skill sets.
- 2. GUIDELINES
Out team pointed out that both ADA (American Diabetes Association) and ISPAD (International Society for Pediatric and Adolescent Diabetes) offer guidelines regarding the importance of psychosocial support embedded within a diabetes team. However, as far as we know, there are very few diabetes programs in the country that have fully-integrated mental health services. Some offer support only at diagnosis, some offer support only if families are already struggling, some offer support only during brief visits as part of diabetes clinic.
- 3. RECOMMENDATIONS:
Our team offered a number of ideas regarding how to increase the availability of mental health services for families who have a child with diabetes. Some of these ideas are implementable immediately; others will take education, advocacy and systems changes.
- Psychosocial screening at diagnosis to help direct scare resources to families that need them most. Assessment of the marital relationship, family’s quality of life, communication and problem-solving skills, level of conflict, can all be easily assessed with validated questionnaires.
- Psychosocial screening annually that can include (based on developmental level) such areas as fear of hypoglycemia, parent stress, disordered eating behavior, depression.
- Set the stage for team’s expectations regarding family management and also regarding psychosocial functioning immediately, at diagnosis. Examples include statement that two caregivers should attend every single outpatient follow up clinic every time; diabetes must be as equally managed by adult caregivers as is possible, children need ongoing support and encouragement and should never be blamed for out of range numbers, tight control matters, technology can be helpful.
- Provide psychosocially-focused workshops for families annually that focus on the unique developmental needs of children in specific stages of life (e.g. supporting your preschooler; thriving through elementary school years; preparing for the middle school years; surviving high school; and preparing for life after high school).
Requires Education, Advocacy, and Systems Changes:
- Insurance coverage for mental health services. Coverage for prevention services will be key (as opposed to coverage after a psychiatric diagnosis is made)
- Mandating mental health services as a requirement for obtaining and maintaining ADA certification
- Increasing the number of mental health professionals who are also Certified Diabetes Educators.
- Training programs specifically designed to train young professionals (nurses, psychologists, psychiatrists, social workers) in the interdisciplinary model where psychosocial care is an integrated part of overall diabetes care. Such programs can focus on both research and clinical training, as the most exceptional individuals are skilled at both.
- 4. ACTION PLANS:
Based on the above-listed discussions, conclusions and recommendations, our workgroup made the following recommendations regarding action plans:
- We recommend that key diabetes-specific stake holders, including ADA, ISPAD and JDRF work together to integrate the existing standards of care from each entity and offer a consensus statement regarding the need for the integration of mental health care into diabetes teams.
- We recommend that key stake holders from both the diabetes world and the mental health world (e.g. American Diabetes Association, the American Psychological Association) work together to advocate for improved collaboration and cross-training of providers, work together to advocate for funding/reimbursement for mental health services, and work together to develop the necessary training for mental health providers to understand the unique aspects of life with diabetes.
- ADA certified diabetes programs must have a fully integrated mental health program in order to become and/or remain certified.
- We recommend that ADA and NIH as well as other stakeholders fund studies that assess different models for integrating psychological care into diabetes programs (e.g. telemedicine, on-line programs, primary prevention approaches, DKA prevention approaches, depression and eating disorder programs). The focus on psychosocial outcomes, metabolic outcomes and health care cost outcomes should all be included).
- We propose an intensive training model, sponsored by key stakeholders, for mental health providers that offers training in the key psychosocial issues for families living with diabetes, from both a developmental AND a family-systems perspective .
- We propose partnering with established mental health programs (e.g. United Health Services) to expand the accessibility of mental health services for individuals and families who would benefit from diabetes-trained providers within the community.