Perspectives of self-direction: a systematic review of key areas contributing to service users’ engagement and choice-making in self-directed disability services and supports

Abstract

Self-directed disability support policies aim to encourage greater choice and control for service users in terms of the health and social care they receive. The proliferation of self-directed disability support policies throughout the developed world has resulted in a growing amount of research exploring the outcomes for service users, and their families and carers. Our understanding of the issues faced by people with disabilities, particularly how they make health and social care decisions and the key areas that determine their engagement with service providers within a self-directed environment is limited. A synthesis of research is timely and can provide knowledge for service users and health and social care support providers to ensure their successful participation. A systematic review guided by the PRISMA approach explored (i) the key areas determining service users' engagement with self-directed disability services and supports, and (ii) how service users make informed decisions about providers. In October 2014 and April 2016, three databases - MEDLINE, CINAHL and Web of Science - were searched for research and review articles. Eighteen sources met the search criteria. Findings were mapped into either: key areas determining service user engagement, or service users' informed decision-making. Findings concerning key areas determining engagement fell into three themes - personal responsibility for budgeting, personalised approaches, and a cultural shift in practice and delivery among service providers. Findings about decision-making yielded two themes - supporting informed decision-making and inhibiting informed decision-making. Literature suggests that self-directed models of care may provide service users with increased control over the services that they receive. Increased control for some service users and their families requires independent external decision-making support, particularly around the domains of budgeting, planning and hiring. Future research must continue to investigate the perspectives of service users pertaining to their engagement, as their participation is central to the effectiveness of the approach.

Perspectives of the National Disability Insurance Scheme: participants’ knowledge and expectations of the scheme

“…Given the wide implementation of self-directed support for people with disability, a growing body of research has sought to provide evidence to better inform the approach. Four literature reviews over the last five years have explored the impact of self-direction for people with disability (Harkes 2014;Sims & Cabrita Gulyurtlu 2014;Crozier et al 2013;Lakhani, McDonald, and Zeeman 2016). Reviews have generally found limited empirical research exploring the impact of approaches on participants and their families (Harkes et al 2014b, Sims & Cabrita Gulyurtlu 2014Crozier et al 2013).…”

“…Reviews have generally found limited empirical research exploring the impact of approaches on participants and their families (Harkes et al 2014b, Sims & Cabrita Gulyurtlu 2014Crozier et al 2013). Findings from the limited research to date suggests that self-directed support has the potential to enable people with disabilities to access health and social support services that they may have not received otherwise (Lakhani, McDonald, and Zeeman 2016), and that this may contribute to their increased quality of life (Harkes, Brown, and Horsburgh 2014;Sims and Cabrita Gulyurtlu, 2014). However, it is also apparent that barriers including inaccessible materials and a lack of professional support in organising resources can potentially prevent the effective engagement of those with disabilities into self-directed models (Sims and Cabrita Gulyurlu, 2014;Lakhani, McDonald, and Zeeman 2016).…”

“…Considerable knowledge gaps exist about the best way to implement selfdirected services and the impact of these services. So, further research is required to understand the impact of the approach on participants (Harkes, Brown, and Horsburgh 2014;Sims and Cabrita Gulyurtlu, 2014), particularly about how participants intend to organise their supports in a self-directed environment (Lakhani, McDonald, and Zeeman 2016).…”

“…Even research participants who had attended information seminars indicated that they did not obtain much information about the impact of the NDIS on their service provision. The lack of participant understanding about the self-directed approach to disability support is a phenomenon which has been identified in global research about self-directed policies for people with disability (see for example, F. Mitchell [2012Mitchell [ , 2014aMitchell [ , 2012b, Dew et al [2013], and Lakhani, McDonald, and Zeeman [2016] for information about the lack of participant understanding of self-directed approaches). with disability receiving services that meet their health and social needs.…”

Consumer‐directed care for older Australians: Are resources identified on the Web adequate to support decisions about home‐based care packages?

“…Finally, the impact of cognitive impairment means that some people may require active personal support to make care‐related and other decisions (Lakhani et al. ; Miller et al. ; Office of the Public Advocate, ).…”