Use of quality information in decision-making about health and social care services - a systematic review

Abstract

What is known about this topic• Quality reporting for health and social care providers was introduced in response to concerns over the quality of services in various countries over the past decades.• Studies in the general population and user surveys found limited awareness and low use of available quality information in health and long-term care. What this paper adds• There is a mismatch between the provided quality information and the information needs of service users.• Trust is a key issue in relation to quality information. Experiential and subjective information is highly valued and trusted.• Most barriers to the effective use of quality information are associated with the decision process -timing and individuals' lack of knowledge or understanding of the processor the characteristics of information -accessibility, content and perceived trustworthiness. AbstractUser 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 find 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 defined 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 qualifications 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 findings 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 'official' 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 difficult 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 identified. Implications for policy and future research are discussed.

Support for family caregivers: A scoping review of family physician’s perspectives on their role in supporting family caregivers

“…Caregivers do not tend to self-identify or ask for support. There is an expectation that family physicians will refer patients and families to the appropriate services and supports and information from physicians is highly valued, but may not be offered in a timely manner (Turnpenny & Beadle-Brown, 2015). Family caregivers now spend 15%-50% of their time negotiating health and social care systems, and then managing the care and services from siloed health and social care services (Taylor & Quesnel-Vallée, 2017).…”

Information-sharing with respite care services for older adults: a qualitative exploration of carers' experiences

“…There are significant continuities in barriers and facilitators to information‐sharing identified within this exploratory study and other empirical studies. For example, in relation to carers' reliance on informal sources for advice and information about respite services (Turnpenny & Beadle‐Brown ); carers' frustrations when services did not meet their expectations (Shaw et al . , Greenwood et al .…”

“…There are significant continuities in barriers and facilitators to information-sharing identified within this exploratory study and other empirical studies. For example, in relation to carers' reliance on informal sources for advice and information about respite services (Turnpenny & Beadle-Brown 2014); carers' frustrations when services did not meet their expectations (Shaw et al 2009, Greenwood et al 2012; apprehension about handing over care (Forbes et al 2012, Phillipson et al 2014; and the risks associated with information-sharing being hurried or based on standardised communications (Payne et al 2002, McPherson et al 2014, Wilson et al 2015. The multiple accounts elicited from carers taking part in our study, however, identified how barriers and facilitators to information-sharing with respite services changed over time.…”

Efficacy of Telephone Information and Advice on Welfare: the Need for Realist Evaluation

“…Nor does it fully consider different motives for seeking I&A, different individual practices and interactions with different forms of information and or advice or other yet to be determined nuances -or even whether the formal imparted I&A was used at all (Turnpenny and Beadle-Brown, 2014).…”

“…However, it is also evident that accessing information does not always have its intended effect in informing and enabling consumers in a welfare context. Furthermore, because formal information is often inaccessible, informal and subjective, the sources of support often prove to be more important in shaping welfare decision-making (Turnpenny and Beadle-Brown, 2014). However, these sources may not always be of high quality or be based on robust evidence.…”