According to this systematic review, the best way to optimize diabetes management for patients with both diabetes and intellectual disabilities is supported self-management, which has numerous obstacles to full implementation.
Diabetes affects people with intellectual disabilities at a higher rate than in the general population, with 2.46 higher odds of developing diabetes and 8.5% of people with intellectual disabilities diagnosed with diabetes, according to a 2022 study. A review published in the Journal of Applied Research in Intellectual Disabilities found that patients with intellectual disabilities who have diabetes need adjustments to education, support, and a person-centered approach to help support self-management of the disease.
The systemized review was limited to peer-reviewed academic literature and a narrative synthesis of findings. The Cumulative Index of Nursing and Allied Health Literature, the British Nursing Index, and MEDLINE databases were searched from December 2021 to January 2022 for studies to include in the review.
Studies were excluded if the publications focused on patients with diabetes without intellectual disabilities, had participants younger than 18 years, had no reference to medication or blood glucose testing, had no barriers or facilitators to managing diabetes with insulin that were identified, or were non–peer-reviewed journal articles. Only studies published in English were included. There were 11 studies that were included in the review.
All 11 studies were assessed for quality with the Critical Appraisal Skill Programme and data were extracted from each one. Data included country and area of study, study setting, whether perspectives of people with intellectual disabilities were included, methodology and study design, and data collection method.
The review found 3 themes related to barriers and facilitators of patients with intellectual disabilities managing their diabetes with insulin: individual factors, the role of other people, and social/environmental factors.
Patients who were unable or were perceived to be unable to check blood glucose or inject insulin had a major obstacle to self-management of the disease, whereas the ability to do both was a facilitator. Self-perception of one’s abilities was also relevant, as patients need confidence in their ability to use the self-management skills they are taught. Lack of knowledge by the patients, due to lack of accessible information or structured education, was another major obstacle in managing diabetes with insulin.
Another theme of the review was the role of other people. Support from family, caregivers, support workers, and health care professionals could help facilitate diabetes management. A shared responsibility for managing diabetes was a facilitator in all but 1 study, and 7 of the 11 studies found that the attitudes of other people could affect a patient’s ability to manage their diabetes.
The social and environmental factors that were most prevalent included reasonable adjustments, which could encompass flexibility in the approach to care, resources that are adapted to the needs of the patient, and projects to improve support for diabetes management. There were 5 studies that identified person-centered care, including the importance of adapting to an individual’s requirements, as an aspect of care that was vital to self-managment. The structure of services—including the time and place of their delivery—was also found to have an influence on diabetes management in 5 different studies.
There were some limitations to this review. Only 3 databases were used to search for the included studies and grey literature and papers not published in English were not included. The authors of the paper do not have diabetes or an intellectual disability, which could lead to different interpretations of the results.
The researchers concluded that there are obstacles to achieving supported self-management in patients with intellectual disabilities who have diabetes, but these obstacles can be overcome.
“Person-centered care, additional support, education, and training are required to appropriately address people’s needs and to reduce inequalities,” the authors wrote.
Beresford CJ, Kozlowska O. The barriers and facilitators to managing diabetes with insulin in adults with intellectual disabilities: a systemised review of the literature. J Appl Res Intellect Disabil. Published online August 18, 2022. doi:10.1111/jar.13027