Choice is a central principle in the personalisation of adult social care. Social care policy in the UK, and in many other countries, emphasises that people with care needs should be provided with choice about who provides their care, and where and how it should be provided.

There are many benefits to providing choice including improving the quality and effectiveness of services, and improving individual outcomes (Dowding & John, 2009). However, the risks of making the wrong choice can be high. If people with long-term care needs have to move to a new nursing home, for example, this could be very harmful for their health (Holder & Jolley, 2012).

High quality information is required to help individuals, and the people who support them, to make the right choices about care. This is particularly important for people with long-term conditions or disabilities. Therefore, Turnpenny & Beadle-Brown (2014) set out to summarise what is known about:

• how people with long-term conditions or disabilities and their family carers find information about the quality of services
• how information about the quality of services informs decision-making about care
• what type of information about the quality of services is most useful in choosing care services

Methods

The researchers used a systematic review to synthesise research findings. They included peer-reviewed research papers published between 2001 and 2012 in their review which focused on adults with a long-term condition or disability making a choice of a social care or healthcare provider.

They defined choice as the assessment of different options and a decision to select one of them. Papers focusing on decisions about whether or not to use a service, or about the type of service to use, were excluded.

The quality of each paper was assessed using a quality appraisal checklist, though none of the papers were excluded because they were of low quality.

The researchers found 13 papers from the UK, USA and the Netherlands which met their inclusion criteria. About half focused on decision-making in healthcare, the other half on social care, and one considered both. Nine of the 13 studies explored the experiences of decision-making using semi-structured interviews or focus groups. The other four used experimental or other quantitative methods.

Results

Bringing together the findings of these studies, the authors found that people with long-term conditions or disabilities had limited awareness of inspection reports or other information about the quality of services. Many described the process of finding a suitable service as ‘working in the dark’.

Those who used information to inform their decision-making described using a wide variety of sources such as advertisements, media, professional advice or brochures.

Information and recommendations from informal networks were particularly important for older people, though many also used online information to help them make choices about their care and support.

The studies in the review found that most choices were based on general information such as the location of the service or the perceived reputation of a provider.

People tended to define quality for themselves using indicators such as cleanliness, friendliness of staff or the general ‘feel’ of the home.

When a decision had to be made quickly, because of urgent need for care, the use of quality information decreased. However, when people used quality information to inform their decision-making they felt more satisfied, empowered and had a greater awareness of personal needs.

The way in which information was presented was important to people with long-term conditions or disabilities and their family members. Verbal and written information which was clear and easy to use was preferred, whereas star ratings and aggregate quality measures were difficult to interpret.

Vague indicators and general results about the quality of providers were seen as unhelpful. However, the most important information about the quality of care was considered to be consumer satisfaction.

Information about subjective experiences of care was regarded as more trustworthy than information provided by service providers or publicly available information on the quality of care.

Conclusions

The researchers concluded that the publication of quality information about social care and healthcare services has had limited impact on the decision-making processes of people with long-term conditions or disabilities, who tend to rely on other sources and types of information when making decisions about care and support.

Strengths and limitations

This review summarised the findings of high quality research on how people with long-term conditions or disabilities use information to make decisions about their care and support. By using specific inclusion criteria, and only including robust peer-reviewed research, the review’s findings are more valid and reliable.

The researchers focused on a specific set of questions which permitted an in-depth focus on the use of information by one group of people with care needs. However, the findings cannot be generalised beyond people with long-term conditions or disabilities.

Also, as the 13 papers included decision-making in both health and social care – which included choices about services or treatments as diverse as elective surgery, healthcare plans or care homes – some of the findings may not be applicable to social care in the UK.

The review was generally well-conducted though some of the procedures, such as quality appraisal, data extraction and thematic coding, could have been conducted by both the researchers working independently. While the second author often checked the work of the first author, it would have been more rigorous if both had worked independently and then compared their findings to minimise the potential for researcher bias.

Summary

People with long-term conditions or disabilities frequently trust information provided to them by friends or family rather than professional sources of information about the quality of care and support services. They are more likely to make their choices using their own definition of quality rather than one provided by a body such as the Care Quality Commission (CQC).

If inspection reports and other quality indicators are to play a meaningful role in informing choices about care and support, their messages need to be communicated clearly and concisely.

Link

Turnpenny, A. and Beadle-Brown, J. (2014), Use of quality information in decision-making about health and social care services – a systematic review. Health & Social Care in the Community. doi: 10.1111/hsc.12133 [Abstract]

References

Dowding K. & John P. (2009) The value of choice in public policy. Public Administration, 87 (2), 219–233. [Abstract]

Holder J.M. & Jolley D. (2012) Forced relocation between nursing homes: residents’ health outcomes and potential moderators. Reviews in Clinical Gerontology 22 (4), 301–319. [Abstract]