Let’s talk about something a little different in research. When we think about research, we commonly think about studying new medications or interventions. Today I want to talk about educational and support needs of people with diabetes. More specifically, about the research into what people living with diabetes need in terms of education and support to self-manage their diabetes, and what health care professionals think they need. How do we get to where we need to be?
Diabetes, Attitudes, Wishes and Needs (DAWN™), was an international study initially undertaken in 2001 to understand how people with diabetes felt about their personal diabetes care, and how health care professionals perceive the delivery of care.
Overall, both groups felt delivery of self-care was poor. At the same time, diabetes-related distress was common. Diabetes-related distress is known to affect the ability to perform self-care. Access to counseling and support to deal with this was limited. Health care professionals in the study failed to recognize emotional problems and diabetes distress, and in general their knowledge and skill in this area was poor.
It was also very obvious from this study, that while health care professionals understood that diabetes care providers need to collaborative to be effective, this was not the case in reality. It was clear that diabetes care delivery needs to be approached differently, allowing for more teamwork and collaboration, with the person with diabetes leading the team.
The other area of need that was identified was that both health care professionals and their patients needed to be more aggressive in their efforts to achieve treatment goals. There was obviously a need to provide more education and psychological support to people with diabetes, but it was also apparent that the care and support were not readily available in many countries. It seemed that the beliefs of people with diabetes and their health care team were worlds apart.
All of this led to a ‘Call to Action’ internationally to change how diabetes care was organized and delivered. This included making diabetes care person-centered, community based, and actively involving the person with diabetes in self-management with support from the diabetes “team”.
Will it work? In November 2012, the follow-up plan for “DAWN2™” was published. This 10-year follow-up study will attempt to fully understand the unmet needs of people with diabetes and their caregivers in 17 countries (including Canada). It will also provide the opportunity to facilitate discussion with those involved in improving the quality of care delivered and developing an internationally validated tool for assessing diabetes care delivery, both educational and psychological. Basically this study seeks to understand how diabetes care is delivered, the gaps in delivery and understanding, and to identify areas of improvement in delivery on many different levels.
In December 2012, a press release issued provided some of the DAWN2™ study’s initial findings, focusing on the experiences of family members of people with diabetes and the lack of support available to them as caregivers.
- 63% are anxious about their loved one developing serious complications from the condition
- 66% are fearful that their loved one will experience hypoglycaemia – with potentially fatal consequences – during the night
- 34% report that their loved one’s diabetes has a negative financial impact on their own life
- One in five have experienced their loved one being discriminated against and facing intolerance within their community
- Over one-third (37%) do not know how best to help their loved one manage his/her diabetes
- 75% had not attended a diabetes education program, in spite of the fact that at least 70% of diabetes healthcare professionals see the involvement of family members as a vital part of good diabetes care
DAWN2™ will help us understand if we, and 16 other countries, are moving in the right direction. It will help us build on the patient-centered team approach to empowering people with diabetes to perform self-care and to ensure they have the emotional support to do so. Obviously from these preliminary findings, we need to do a better job educating and supporting the caregivers as well.
Diabetes is not just a disease; it is a way of life. We need to ensure that we are working to improve diabetes self-management, identify and reduce diabetes distress and provide education and psychological support to improve the quality of life for people living with diabetes and their support system, family friends, and caregivers. We need to make their “wishes” come true!