Negotiated autonomy in diabetes self-management: the experiences of adults with intellectual disability and their support workers.
Diabetes autonomy in adults with ID is a daily negotiation, not a fixed grant of freedom.
01Research in Context
What this study did
Researchers talked with adults who have intellectual disability and the staff who help them. They asked how the adults handle daily diabetes tasks like checking blood sugar or picking food.
The talks happened in the UK. No one got a new treatment. The team just listened to real stories.
What they found
Choice is not a yes-or-no switch. It is a back-and-forth dance. The adult, family, and staff keep re-balancing freedom and safety every day.
One day the adult might do the finger stick alone. The next day staff take over if the numbers look risky. The balance moves with mood, health, and trust.
How this fits with other research
Hooren et al. (2002) saw the same dance in adults with Prader-Willi syndrome who face food temptations. They also found that locking up food hurts trust. The new study shows the pattern repeats with diabetes.
Houseworth et al. (2023) counted choices made by over 9,800 adults with IDD. Everyday choices rose, but support choices stayed flat. The 2016 stories explain why: staff and adults keep negotiating, so progress is slow.
Vallury et al. (2025) later found women with ID fight for reproductive choice against coercion. Same theme: autonomy is earned through talk, not granted by policy.
Why it matters
Stop asking "Can this adult be independent with diabetes?" Start asking "What can we negotiate today?" Write a quick shared plan each morning: who does the finger stick, who chooses the snack, and what signal means "I need help." Update at supper. This tiny ritual turns abstract autonomy into real, safe practice.
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02At a glance
03Original abstract
BACKGROUND: The basic human right of autonomy is underpinned by the ability to practice decision-making. The rights of people with disabilities to engage in autonomous decision-making are promoted as best practice and includes decisions around health and self-care. Little is known about autonomy in the field of long-term condition management. This paper explores how people with intellectual disabilities (ID) and their support workers experience and practice autonomy in relation to the management of diabetes. METHODS: Semi-structured interviews were completed in residential and independent living settings with people living with an ID and type 1 (N = 8) or type 2 (N = 6) diabetes and their support workers (N = 17). The participant with ID's support worker was present as requested; however, the interviews were run separately with each participant rather than jointly. Thematic analysis was undertaken, and a constructivist lens informed both data collection and analysis. RESULTS: The analysis revealed a strong process of negotiated autonomy between people with ID and their support workers in relation to the daily management of diabetes. During times of transition, roles in relation to diabetes management were renegotiated, and the promotion of autonomy was prefaced within the context of risk and client safety. Goals to increase independence were drivers for negotiating greater autonomy. CONCLUSIONS: The successful negotiation of autonomy in relation to diabetes illustrates the potential for people with ID to play a key role in the management of long-term health conditions. The study highlights the primacy of developing decision-making skills among people with ID. Promoting opportunities for decision-making and an ethos of supported decision-making through person-centred planning are all vital in working towards enhancing autonomy.
Journal of intellectual disability research : JIDR, 2016 · doi:10.1111/jir.12257