Negotiated autonomy in diabetes self-management: the experiences of adults with intellectual disability and their support workers.

Abstract

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. 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. 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. 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.