Self-Directed Support: A Review of the Barriers and Facilitators

3 METHODOLOGY

3.1 This report is based on a systematic search of the research literature examining self-directed support ( SDS) in social care and factors that act as barriers or facilitators to the up-take and development of SDS in the United Kingdom ( UK). Based on the above work outlining the range of definitions being employed in this area, we broadened the scope of this study beyond what is self-defined as SDS. We used several methods to identify studies and contextual material. First, a search of key bibliographic databases was undertaken in August 2009 and updated in 2010. The search was primarily conducted using online research databases (Web of Knowledge, PubMed, Social Care Online). Additional searches were also carried out using relevant government (such as the Scottish Government and Department of Health) and third sector websites (such as In Control) for literature that may not be available on research databases. The references were entered into Endnote X1, a bibliographic database.

3.2 To supplement this process, references used in the articles identified were also examined to locate any further material. Additionally, the references identified through these search methods were compared with those used in the recent literature review of personalisation for mental health service users, conducted by Val Williams, Pauline Heslop and Helen Spandler for the MIND research project 'Putting Us First' to which we were kindly given early access. We also contacted researchers working in this area to obtain material that is in press. We are grateful to them for their assistance.

3.3 Search terms used were (including truncation symbols, exact phrases, and Boolean logic): direct payments; self directed support; individual budgets; personal budgets; cash and counselling; cash and counselling; personalisation; personalization. The searches covered words in the title, abstract or in key words. As chapter 1 outlines, a notable feature of this review is that the area is in flux with a considerable range of terms being used. While we are using the term self-directed support as a general term, for example, many of the articles located did not mention this phrase. Commonly found terms included: direct payments, individual budgets, personal budgets, and consumer directed care. There were also some mentions of person-centred planning/support/care and independent living. Particular attention was paid to mention of bureaucracy and 'red tape', to leadership and to transitional funding in order to relate this review to Scottish Government policy interests and to the wider study of which this review is a part.

Inclusion criteria for search

3.4 Publications were included if they covered adult social care, were in the English language and made reference to barriers and facilitators. In light of the recent developments in this area, there was no limit on the date of material accessed.

Exclusion criteria for search

3.5 Publications were excluded if:

• They did not contain evidence of barriers or facilitators of SDS
• They were statute or regulations
• They were summaries of reports already cited that did not contain new findings or analysis.

3.6 After the online searches, relevant publications were extracted, and the database contained 161 references.

Screening procedure

3.7 The references found through the literature review were read by the review team, initially by the abstracts, where available, and a subjective judgement about their relevance to the review. If the team agreed that the article or material was relevant, the full item was read. Summary notes were then created for each of the publications, based on a data extraction tool developed by the review team that had been commented on and agreed with the Research Advisory Group

Comments on research quality

3.8 When examining the evidence from across the UK and internationally ^{( 163)} the limitations of the research base emerge. First, there is much variation in the scope and focus of evaluation studies or implementation accounts. Some are looking at certain groups or at particular funding approaches. Second, studies are often small-scale and/or characterised by small sample sizes with little long-term follow up. Third, some accounts are commentaries or hypotheses. Furthermore, much of the literature reported the experiences of people who are most likely to be offered, or to take up, SDS schemes and therefore when looking at barriers to take up, for example, this group may not provide the best source of evidence. However, it is important to note the limited evidence base for much social care. Direct Payments are among the most studied areas of social care and the Evaluation of Individual Budgets ( IBSEN study) is one of the most detailed and robust studies in social care.