Self‐Management Abilities of Diabetes in People With an Intellectual Disability Living in New Zealand

Abstract

Self‐management of diabetes is encouraged; however, it is not an easy task and requires a good understanding of the disease. To determine how to improve the self‐management abilities of diabetes in people with an intellectual disability (ID), this study explored the knowledge and understanding of diabetes held by a select group of adults with diabetes. The group was made up of 14 adult New Zealanders (eight males and six females; age range 23–69 years) with type 1 diabetes (n = 6) and type 2 diabetes (n = 8). They and their nominated key informants were interviewed. Blood sugar levels (gained from using hemoglobin A1c (HbA1c) tests) were obtained on all participants. HbA1c levels ranged from 5.4% to 12.3%. The participants fell into three categories of understanding diabetes: (1) those who had a good understanding of the disease; (2) those who had some knowledge but their actual understanding was limited; and (3) those who demonstrated only a very basic knowledge. It was found that all of the adults were actively engaged in the self‐management process, and all appeared to have some understanding of the role of diet, blood sugar levels, and exercise in the management of their disease. Support from others was important in this process, even for those adults who had a good understanding of the disease. Diabetes significantly impacted the adults' lives, and in some cases, prevented them from living independently. When interviewed, the adults suggested strategies to assist with self‐management such as the use of a “buddy” system to encourage exercise. Authors concluded that adults with ID can be engaged in self‐management of their diabetes. However, it is important that they continue to receive education and support throughout their lives and that time be spent with each individual to identify how to provide the best education and support. Peer‐led education and user‐friendly resources are recommended to achieve lifelong education and support.

The role of key workers in supporting people with intellectual disability in the self-management of their diabetes: a qualitative New Zealand study

“…) not only about diabetes but also in relation to, and alongside the person who has the condition (Hale et al . ). However, there is a tension within the intellectual disability sector in regard to how much information direct‐care staff should have about health issues, their role in managing these and where the responsibility lies for imparting this (Cardol et al .…”

“…To develop self‐management skills, we recommend a steering away from a deficits model of practice to one in which the knowledge, skills and approaches both of the staff concerned and the people they support are explored in relation to actual or perceived challenges in the self‐management of long‐term conditions such as diabetes (Hale et al . , McVilly et al . ).…”

“…Key workers were nominated by participants with intellectual disability who had consented to the study (Hale et al . ).…”

“…The results for participants in this study with intellectual disability are reported elsewhere (Hale et al . ).…”

Primary healthcare interventions for people with intellectual disability

“…A recent New Zealand qualitative study demonstrated that with appropriate education, people with mild to moderate ID can build on and develop different levels of understanding and knowledge regarding their own health, for example, diabetes (Hale, Trip, Whitehead, & Conder, 2011). The authors noted it was useful to involve family and caregivers, and it was important to provide ongoing advice and support.…”