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
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.
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.
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.
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.
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]
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]
Don’t miss @mgoat73 blog today! QVC or CQC? How people make choices about social care http://t.co/izcGigDFX8 Research from @TizardCentre
@SocialCareElf @mgoat73 @TizardCentre Great blog Martin, but is that REALLY the choice!? QVC or CQC? Personally I’d prefer a spot of #EBP
@Mental_Elf @SocialCareElf @TizardCentre Research evidence doesn’t seem to be used much in user & carer decisions about long term care
@mgoat73 @Mental_Elf @SocialCareElf @TizardCentre Could imagine. Choices are not prevalant where inequalities often sit.
@mgoat73 @SocialCareElf @TizardCentre Why is that? Poor access, no time, lack of interest, lack of evidence, researchers studying wrong Qs?
@Mental_Elf @SocialCareElf Review didn’t go in to detail about this. Perhaps colleagues at @TizardCentre could answer?
@Mental_Elf @SocialCareElf @TizardCentre My suggestion is that research evidence is not immediately available in brochure format which (1/2)
@Mental_Elf @SocialCareElf @TizardCentre … helps people to make decisions. It needs to inform practitioner and commissioner decisions tho.
QVC or CQC? How people make choices about #socialcare http://t.co/wXl2qV35Fw By @mgoat73 via @SocialCareElf #care
QVC or CQC? How people make choices about social care http://t.co/QVDU9NJeUW via @sharethis
[…] my latest Social Care Elf blog I review a systematic review exploring how people with long-term conditions or disabilities use […]
Today’s blog looks at research on how people make choices about health & social care http://t.co/izcGigDFX8 @Co4CC @TLAP1 @skillsforcare
@SocialCareElf @Co4CC @skillsforcare thanks v much, really helpful & will make sure to pass on to my colleagues in @tlap1
@SocialCareElf @Co4CC @TLAP1 @skillsforcare the @The_Q_Kit @SouthdownHA have done gr8 work enabling ppl who use services to define ‘quality’
QVC or CQC How people make choices about health & #socialcare @mgoat73 for @SocialCareElf http://t.co/fYQx0FJNfd family/friends more trusted
@mgoat73 @SocialCareElf interesting & topical study in view of the info & advice requirements of the #CareAct
@shirleyayres @SocialCareElf Yes, it certainly is! Friends and family are trusted more than official information – generally, of course.
@mgoat73 @SocialCareElf I receive many requests for #socialcare info & advice – new role for online trusted independent intermediaries?
@mgoat73 @SocialCareElf clear message about importance of communicating info clearly & concisely – why does #socialcare need jargonbusters!
@mgoat73 @shirleyayres @SocialCareElf Personal experience is that reliance is on someone they knew’s experiences (15 yrs ago)
@Crouchendtiger7 Do the findings of this review on @SocialCareElf surprise you? Can CQC do anything different? http://t.co/LQr7RDSbXN
@mgoat73 @SocialCareElf good analysis Martin & consistent with own findings. Reason why @CareQualityComm revamped inspections & now rate 1/2
@mgoat73 @SocialCareElf too early to assess impact yet but we’ll evaluate. Also imp to raise awareness of @CareQualityComm reports 2/2
@Crouchendtiger7 @SocialCareElf @CareQualityComm Thanks, Andrea. Yes, it will be interesting to see what impact the changes have.
@loyaldrift blog frm @SocialCareElf – how people make choices about social care & perceptions of quality http://t.co/eMoairX56d @The_Q_Kit
Useful for #Health2020 a review of how people make choices about health & #socialcare by @mgoat73 http://t.co/fYQx0G1o6L #EHWK15
QVC or CQC? How people make choices about social care http://t.co/Fcgk9kdnkh
RT @SocialCareElf “Today’s blog looks at research on how people make choices about health & social care” @southdownHA http://t.co/BcCkut1D47
[…] on their effectiveness or acceptability. Research that was cited in the report and blogged on here suggested that information from friends or family is more likely to be trusted than many […]