Repertoires of responsibility for diabetes management by adults with intellectual disabilities and those who support them

Abstract

The limited existing research on diabetes management and intellectual disabilities (ID) highlights the need for further exploration of the concept of responsibility. This study explored repertoires of responsibility in accounts of managing diabetes for adults with ID. Fourteen semi-structured interviews were conducted in the UK with seven adults with mild/moderate ID and type 1 or 2 diabetes and seven people who they nominated as supporting their diabetes management. A discursive psychological analysis found that interpretative repertoires relating to competence, independence and accountability were drawn on to construct multiple and sometimes conflicting versions of responsibility. Within these repertoires people with ID were positioned in conflicting ways; as competent, personally responsible, and entitled to independence and choice, but as also lacking competence, dependent on others and incapable of overall accountability. People with ID often took up empowering positions defending against an incompetent identity. Supporters built accounts which negotiated dilemmatic repertoires on the dual responsibilities of empowering adults with ID to self-manage and managing risk to support good and safe care. The implications of available discursive resources and the ways in which they are mobilised are considered.

Diabetes self‐care behaviors in adults with disabilities: A systematic review

“…Interestingly, special occasions (e.g., party, weekend, having visitors, etc. ), which made participants feel that they were permitted to break from their diabetes regimens, and negative feelings (e.g., lonely, depressed, and afraid) were both reported as barriers (Cardol et al, ; Rouse & Finlay, ).…”

“…In contrast, the most powerful facilitator of diabetes self‐care behaviors in people with a developmental disability was support (Cardol et al, ; Hale et al, ; Rouse & Finlay, ). Other factors including education, motivation, confidence, successful negotiation of autonomy between supporters and people with an intellectual disability, and responsibility helped participants engage in diabetes self‐care behaviors (Cardol et al, ; Hale et al, ; Rouse & Finlay, ; Whitehead et al, ).…”

“…Item 10 was concerned with adequately representing the participants' voices. These six items were rated "yes" for seven of the qualitative studies (Cardol et al, 2012;Hale et al, 2011;Kaminsky et al, 2014;Livingstone et al, 2011;Rouse & Finlay, 2016;Whitehead et al, 2016;Williams, 2002). Item 7, which represents the influence of the investigators on studies, was rated zero.…”

“…In terms of study designs, seven articles used a qualitative design (Cardol et al, 2012;Hale et al, 2011;Kaminsky et al, 2014;Livingstone et al, 2011;Rouse & Finlay, 2016;Whitehead et al, 2016;Williams, 2002) and 12 used a quantitative design including quasi-experimental studies (Bernbaum et al, 1989;Carrington et al, 2001;Oehler-Giarratana & Fitzgerald, 1980;Prior et al, 1984;Trozzolino et al, 2003;Windecker et al, 1997), retrospective cohort studies (Patel et al, 2016;Reichard et al, 2012;Shireman et al, 2010;Tseng et al, 2006), and cross-sectional studies (Pham et al, 1996;Taggart et al, 2013). One article used participatory action research (Williams, 2005).…”

“…Interestingly, special occasions (e.g., party, weekend, having visitors, etc. ), which made participants feel that they were permitted to break from their diabetes regimens, and negative feelings (e.g., lonely, depressed, and afraid) were both reported as barriers (Cardol et al, 2012;Rouse & Finlay, 2016). In contrast, the most powerful facilitator of diabetes selfcare behaviors in people with a developmental disability was support (Cardol et al, 2012;Hale et al, 2011;Rouse & Finlay, 2016).…”