A new qualitative study from UK researchers suggests that digital tools such as self-management apps and internet based programs have tremendous potential but do not meet the needs of people with diabetes.
By Shaira Baptista
Diabetes is a difficult condition to live with and there are many digital tools, such as diabetes self-management apps and internet-based programs, which have the potential to help alleviate this burden and improve self-management. Thousands of apps and other online self-management tools for diabetes are already available but their actual uptake and ongoing use is very low among people with diabetes. One of the reasons for this may be that they do not currently meet the needs of people with diabetes.
In a recent article published in the Journal of Medical and Internet Research, Dr Kingshuk Pal (UCL) and colleagues facilitated four focus groups (20 participants) to explore the unmet needs of people with type 2 diabetes in terms of self-management and support, and their views on the potential and role of ‘digital health interventions’.
Many participants reported experiencing a ‘significant and constant’ burden as a consequence of being diagnosed with type 2 diabetes. They felt a sense of loss, that the identity of being a person with type 2 diabetes was negative, impacted by diabetes-related stigma, shame, perceptions of ill-health, and that the demands of self-managing the condition were tremendous. The most difficult thing to manage was negative emotions related to diabetes, including depression, anger, frustration and guilt. While participants were appreciative of their healthcare generally, many reported difficulties accessing their medical professionals, feeling that they lacked interest or expertise, and were increasingly concerned about a “’tick box’ culture”. They also reported that the diabetes information they were given was too complex, or not in-depth enough, and not made personally relevant to them. It was also important to them that support from self-management technology was integrated with routine care and was not ‘stand-alone’.
Many participants said that, for a digital tool to be useful, it must be a ‘one stop shop’. In addition to medical management, it should also provide diabetes education, links with healthcare professionals, lifestyle advice and coaching. They said it was vital that the information is presented positively, and an emphasis on what the person can do to delay/prevent complications while “avoiding ‘victim blaming’ when things do go wrong”. They also emphasised a need for support for coping with the emotional impact of diabetes, as well as addressing how to manage social relationships with family and friends, work colleagues and expectations at work.
Existing health care services focus almost exclusively on the medical management of diabetes and information provision. Similarly, many digital health interventions or apps also focus on specific, and often medical, aspects of diabetes management – usually blood glucose monitoring. Thus, the findings of this recent study indicate that much work remains to be done to address the unmet needs of adults with type 2 diabetes, and to provide digital tools that people with diabetes not only need but want.
Reference: Pal K, Dack C, Ross J, Michie S, May C, Stevenson F, Farmer A, Yardley L, Barnard M and Murray E (2018) Digital health interventions for adults with type 2 diabetes: Qualitative study of patient perspectives on diabetes self-management education and support. Journal of Medical Internet Research 20(2), e40: doi: 10.2196/jmir.8439.