User choice and personalisation have been at the centre of health and
social care policies in many countries. Exercising choice can be especially
challenging for people with long-term conditions (LTC) or disabilities.
Information about the quality, cost and availability of services is central
to user choice. This study used systematic review methods to synthesise
evidence in three main areas: (i) how people with LTC or disabilities and
their family carers ?nd and access information about the quality of
services; (ii) how quality information is used in decision-making; and
(iii) what type of quality information is most useful. Quality information
was de?ned broadly and could include formal quality reports (e.g.
inspection reports, report cards, etc.), information about the characteristics
of a service or provider (e.g. number and quali?cations of staff, facilities,
etc.) and informal reports about quality (e.g. personal experience, etc.).
Literature searches were carried out using electronic databases in January
2012. Thirteen papers reporting ?ndings from empirical studies published
between 2001 and 2012 were included in the review. The majority of
papers (n = 9) had a qualitative design. The analysis highlighted the use
of multiple sources of information in decision-making about services and
in particular the importance of informal sources and extended social
networks in accessing information. There is limited awareness and use of
‘of?cial’ and online information sources. Service users or family carers
place greater emphasis on general information and structural indicators.
Clinical or quality-of-life outcomes are often dif?cult to interpret and
apply. Trust emerged a key issue in relation to quality information.
Experiential and subjective information is highly valued and trusted.
Various barriers to the effective use of quality information in making
choices about services are identi?ed. Implications for policy and future
research are discussed
