Support for self-management of cardiovascular disease by people with learning disabilities

Abstract

People with LD can be effectively consulted regarding health management and their views can inform service development. Promoting joined-up support across health and social care and families will require investment in resources, education and dismantling of professional barriers.

Promoting Independence of People with Intellectual Disabilities: A Focus Group Study Perspectives from People with Intellectual Disabilities, Legal Representatives, and Support Staff

“…If everyone is united on how to guide a person with ID, it is also clear to everyone what to do and what to expect, which could benefit the promotion of independence. Another reported requirement, convergent with previous studies (Hale et al, ; Kuijken et al, ; Petner‐Arrey & Copeland, ; Young et al, ), is a tailored, individualized approach, next to a step‐by‐step plan. This can be achieved by adapting to an individual's level, goals, and speed of learning.…”

“…Nevertheless, Storey (2007) concludes from his review that interventions need to be tailored to the individuals' specific needs and context. This finding is supported by several qualitative studies on self-management of illness and health in people with ID (Hale et al, 2011;Kuijken et al, 2016;Young, Naji, & Kroll, 2012). Several ways of tailoring to people with ID are suggested: providing information visually, using easy-to-understand language, and ensuring sufficient time and repetition.…”

“…To tailor interventions effectively, insight is needed into the preferences, and resources of people with ID, and their individual, interpersonal, and environmental barriers (Bartholomew, Parcel, Kok, Gottlieb, & Fernández, 2011;Kuijken et al, 2016). Although the abovementioned studies (Hale et al, 2011;Kuijken et al, 2016;Storey, 2007;Young et al, 2012) provide some important clues, when it comes to promoting the overall level of independence of people with ID still too little is known about these issues. To create a better understanding of how to promote independence in people with ID, perspectives need to be obtained from those whom it concerns the most, which are people with ID (Hale et al, 2011;Young et al, 2012) and those who support them (Totsika, Toogood, Hastings, & Nash, 2008), that is, their legal representatives and support staff.…”

Training staff to promote self‐management in people with intellectual disabilities

“…The heterogeneity of the studies’ specific goals, designs and outcome measures also impedes a proper comparison of the interventions and their impact (Dannenberg, Mengoni, Gates, & Durand, ). However, important factors for an effective intervention seem to be that it can be adapted to the individual user and the specific context (Hale et al., ; Storey, ; Young et al., ), and that not only people with intellectual disabilities are involved, but also those who care for them (Hale et al., ; Wilson & Goodman, ; Young et al., ). Although both were the case in the intervention that we evaluated, its effect was still small.…”

“…Previous research on self‐management in people with intellectual disabilities has focused mainly on specific behaviours or domains. For instance, various studies have concentrated on health behaviour (e.g., Hale et al., ; Taggart et al., ; Wilson & Goodman, ; Young, Naji, & Kroll, ), work‐related activities (Rusch & Dattilo, ; Storey, ), challenging behaviour (e.g., Adkins, Singh, Winton, McKeegan, & Singh, ; Benson, ; Embregts, ; Rossiter, Hunnisett, & Pulsford, ), self‐instruction (e.g., Smith et al., , ) and the use of technology (Douglas, Ayres, & Langone, ; Ramdoss et al., ). What is valuable for people with intellectual disabilities in terms of self‐management is that they learn to do more by themselves, thereby becoming more independent and self‐reliant.…”