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

Abstract

The incidence of diabetes in people with an intellectual disability, although unknown, is indicated to be higher than the general population. Given the challenges individuals with intellectual disability may face, this population is often dependent upon key workers to manage their health and well-being. One aim of a wider study on the self-management of diabetes by people with intellectual disability was to explore how key workers supported their self-management. That aim was the focus of this paper. Between 2009 and 2010, 17 staff from five residential intellectual disability services and two supported independent living services within New Zealand, consented to a semi-structured interview. Transcripts of the interviews were analysed using Thomas' General Inductive Approach. Three overarching themes emerged; having knowledge and understanding, being lifestyle police and ensuring future well-being. While knowledge, skills and perspectives varied, all participants were committed to ensuring that the lifestyle of the person concerned was compatible with the management of their diabetes. A range of perspectives existed between the expectations they had of themselves, colleagues and the individual with diabetes. There was an identified need for initial and ongoing education of permanent and casual staff and the people themselves with diabetes in collaboration with health and disability services to build confidence and promote self-management practices. In so doing, the impacts of this long-term condition may be reduced and the health outcomes improved for people with intellectual disability.

Improving diabetes care for people with intellectual disabilities: a qualitative study exploring the perceptions and experiences of professionals in diabetes and intellectual disability services

“…This was due to the belief that diabetes information might be too complex for some people with ID, lacking an understanding of risks and consequences. These findings are in keeping with previous research by Bazzano et al (), suggesting that people with ID are excluded from decisions about their healthcare and opportunities for self‐management due to concerns about their cognitive limitations and autonomous decision‐making abilities (Cardol et al ; Trip et al ; Whitehead et al ). Alternatively, the exercising of clinical judgement by experts in diabetes management can be justified in preventing the risk of hypoglycaemia.…”

“…Ensuring that practitioners from diabetes, ID and social care services receive diabetes education as part of their professional development is an area that requires attention. The need for education of social care support workers has been reported by Cardol et al (2012a) and Trip et al (2015) and is supported by findings from the current study. An important finding from this study is the need for education regarding the needs of people with ID for practitioners in diabetic services.…”

“…Cardol et al () reported a lack of appropriate diabetes educational material, competing work role demands and inadequate resources as barriers to diabetes care and positive self‐management. Additionally, the study undertaken by Trip et al () in New Zealand supports the findings from the current study of the need for initial and ongoing education of support workers and improved collaboration and communication across services. The current study builds upon these findings by evidencing the need for diabetes management and care to be provided within mainstream diabetes services, improved diabetes and ID education.…”

“…In contrast, practitioners in ID healthcare services and social care services lacked up-to-date knowledge regarding diabetes management (Cardol et al 2012a;Taggart et al 2013Taggart et al , 2014Taggart et al , 2015bTrip et al 2015). There is therefore an opportunity to develop shared learning that addresses these gaps in knowledge and competencies to improve patient outcomes and diabetes management, promote coordinated care and improve communication and information sharing (Barr & Gates 2008).…”

“…Cardol et al () explored the experiences of ID residential staff in the Netherlands and reported that diabetes care was directed towards administering medication and dietary control with little focus on self‐management behaviours, linked to limited diabetes training. Trip et al () undertook a study involving 17 support workers in New Zealand regarding their role in supporting self‐management of diabetes. The study identified the need for further education for people with ID and both permanent and casual staff to promote self‐management and build confidence, with a view to reducing health inequalities.…”