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Personal health budgets (PHBs) in England have been viewed as a vehicle for developing a personalised patient‐based strategy within the substance misuse care pathway. In 2009, the Department of Health announced a 3‐year pilot programme of PHBs to explore opportunities offered by this new initiative across a number of long‐term health conditions, and commissioned an independent evaluation to run alongside as well as a separate study involving two pilot sites that were implementing PHBs within the substance misuse service. The study included a quantitative and qualitative strand. The qualitative strand involved 20 semi‐structured interviews among organisational representatives at two time points (10 at each time point) between 2011 and 2012 which are the focus for this current paper. Overall, organisational representatives believed that PHBs had a positive impact on budget‐holders with a drug and/or alcohol misuse problem, their families and the health and social care system. However, a number of concerns were discussed, many of which seemed to stem from the initial change management process during the early implementation stage of the pilot programme. This study provides guidance on how to implement and offer PHBs within the substance misuse care pathway: individuals potentially would benefit from receiving their PHB post‐detox rather than at a crisis point; PHBs have the potential to improve the link to after‐care services, and direct payments can provide greater choice and control, but sufficient protocols are required.

BackgroundSocial care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments.A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes.MethodsTo evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to ‘think aloud’ while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent’s comprehension of the format, layout and content of each item and also how they weighed up the options to formulate a response.ResultsA total of 25 unpaid carers and care workers participated in three iterative rounds of cognitive interviews. The findings indicate that the items were well-understood and the concepts were consistent with the item definitions for the standard self-completion version of ASCOT with minor modifications to the draft ASCOT-Proxy. The ASCOT-Proxy allows respondents to rate the proxy-proxy and proxy-patient perspectives, which improved the acceptability of proxy report.ConclusionsA new proxy-report version of ASCOT was developed with evidence of its qualitative content validity and acceptability. The ASCOT-Proxy is ready for empirical testing of its suitability for data collection as a self-completion and/or interview questionnaire, and also evaluation of its psychometric properties.

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New or adapted methods and tools are needed to ensure the voices of older people with cognitive impairment and dementia are included in evaluations of care services which aim to support their quality of life (QoL). In this study, cognitive interviewing practices were used with a group of 26 older service users with cognitive impairment from two service providers in New South Wales, Australia, to test and modify the Adult Social Care Outcomes Toolkit Easy Read (ER) survey to improve its suitability for this cohort. We used Antonovsky’s “sense of coherence” framework to describe our research approach and how it was adapted to provide a manageable, meaningful, and comprehensible experience for our participants. While the modified ER format made the survey more comprehensible and meaningful, it was the techniques of cognitive interviewing that made the research approach manageable. We argue that while ER does support the research process for older service users with cognitive impairment, combining ER pictorials with the qualitative interactions with the researcher, in particular cognitive interviewing strategies, is needed to support a cohesive approach to assess care-related QoL in this vulnerable group.