Sarah Robertson is a PhD student with funding from the NIHR Collaborations in Leadership in Applied Health Research and Care. Sarah is currently supervised by Professor Gill Livingston, Dr Claudia Cooper & Dr Juanita Hoe.
The MARQUE project
In 2012, the UK government announced that in the face of “one of the biggest health challenges ever” that it was time to “fight back” against dementia. In response, the ESRC & NIHR pledged £9 million towards “Improving Dementia Care”. One of the projects funded by this initiative is the Managing Agitation Raising Quality of LifE (MARQUE) project at UCL led by Professor Gill Livingston. MARQUE began in 2014 and aims to improve our understanding of agitation in care homes and improve the quality of life of people with dementia. Sarah has been working as part of the MARQUE team at UCL and this work inspired her thesis comparing the perspective of paid and family carers in quality of life.
Proxy rated quality of life
Measuring quality of life in dementia presents unique challenges. With the stakes so high, it is important that we understand what we are actually measuring to know whether our interventions to enable people to live well are successful. Many people with dementia in care homes cannot provide ratings on their own quality of life so we rely on the perspectives of people close to them. We call these proxy reports. These reports differ to self-reported quality which has raised questions about the validity of this outcome. However, we do not know how staff and family proxy reports compare.
How do staff and family ratings compare?
MARQUE collected the perspectives of both staff proxies and family proxies from 86 care homes across England; providing 1,054 pairs of proxy ratings in the largest sample to date. For the first time, we used mixed method to explore staff and family ratings.
Our results suggest that staff and family proxies think differently about the quality of life of the same individual with dementia. Quantitative data from this study reveals that staff generally perceive the quality of life as better than family. Staff and family are affected by their own understandings of dementia and their experiences with care. Staff often viewed quality of life as synonymous with quality of care, whereas, family were more influenced by their past experiences.
Many relatives found that the person with dementia had changed. For some, this change centred on loss which they felt evidenced a poor quality of life. Other relatives felt that quality of life is simply not possible living in a care home. Transitioning into a care home is not only stressful at the time, it may leave a lasting impact on how relatives view the quality of life of a person with dementia in the future. Relatives need support to think about how the person with dementia feels in the present moment, focusing on their enjoyment of life with an acceptance of the current situation. Better communication and transparency in care routines helped facilitate relative involvement within care homes, establishing trust which improved perceived quality of life and reduced family carer stress.
What does this mean for dementia research?
- Proxy reports provide valid measures of perceived quality of life.
- Proxy raters are influenced by their own context and experiences.
- Proxy ratings by different raters cannot be used interchangeably.
- Different proxy ratings may be differently sensitive to interventions.
- The different opinions of all key stakeholders should be considered.
What does this mean for clinical practice?
- Within care homes, there are context specific factors that influence resident quality of life.
- Psychological interventions that target loss, focus on acceptance and enable proxies to find meaning could improve perceived quality of life.
- Improving the relationship between staff & family could improve perceived quality of life.
- There may a link between perceived quality of life and carer quality of life.
Media coverage of the use of statins to prevent cardiovascular disease, of Tamiflu to treat flu and of the HPV vaccine to prevent cervical cancer have opened up public debate about medical and scientific claims.
CLAHRC researcher and leader of our behaviour change theme Professor Rob Horne (pictured below) has helped produce new resources for professionals and patients to improve the way evidence about medicines is communicated.
Professor Horne is part of a prestigious Oversight Group within the Academy of Medical Sciences looking at how scientific evidence around medicines can best be communicated and understood.
Their report entitled Enhancing the use of scientific evidence to judge the potential benefits and harms of medicines aims to address problems that can arise from poor-quality evidence about medicines, or misrepresentation or misperception of evidence.
The report and associated resources will help health professionals to improve the use of scientific evidence to judge the potential benefits and harms of medicines. This will lead to better, more informed conversations between professional and patient about the benefits and risks of prescribing (or not prescribing) a particular medicine.
Other resources produced as part of this work include a pocket guide for patients entitled Helping you decide whether to take a medicine
Training clinicians to proactively ask patients about domestic violence and abuse (DVA) is feasible for sexual health clinics to implement and could increase referrals to specialist services, according to a joint CLAHRC North Thames/CLAHRC West study led by researchers at Queen Mary University of London (QMUL) and the University of Bristol involving over 4,300 women.
The risk of gynaecological and sexual health problems (including sexually transmitted infections, painful sex, vaginal bleeding and recurrent urinary tract infections) is three-fold higher in women who have suffered DVA. Meanwhile, 47 per cent of women attending sexual health services will have experienced DVA at some point in their lives.
Sexual health services can be the first point of contact for women who have experienced DVA, and were listed by the National Institute for Health and Care Excellence (NICE) as a setting in which all patients should be asked about DVA. However, most sexual health professionals have had minimal training in identifying and responding to DVA.
The study looked at the feasibility of sexual health clinics adopting a programme called IRIS (Identification and Referral to Improve Safety) – a DVA training and referral programme endorsed by NICE, the Royal College of GPs and Department of Health, originally aimed at encouraging GPs to ask patients whether they are experiencing DVA and to make referrals to specialist domestic violence services.
The team tested the intervention in two female walk-in sexual health services; an east London clinic serving an inner-city multi-ethnic population, and a Bristol clinic serving an urban population.
In the east London clinic over seven weeks, 267 out of 2,568 women attending were asked about DVA, with 16 of those (6 per cent) saying that they were affected by abuse. Overall, eight of the women affected by abuse (50 per cent) were referred to specialist services.
In the Bristol clinic over twelve weeks, 1,090 out of 1,775 women attending were asked about DVA, with 79 of those (7 per cent) saying they were affected by abuse. Overall, eight of the women affected by abuse (10 per cent), were referred to the specialist services.
Lead CLAHRC North Thames researcher Dr Alex Sohal (pictured left) said:
“Women attend sexual health clinics for care of their sexual health but little thought is given to whether the relationship with the person that a woman has sex with directly harms her health. Without training, system level changes and senior managerial support, clinicians end up ignoring DVA in consultations or have an arbitrary approach that fails many women affected by DVA.
Not only is this a feasible intervention for a sexual health clinic setting, but we also found that clinical leads and busy local DVA service providers were incredibly supportive, with many people understanding the importance of making this work.”
Read the full paper:
Improving the healthcare response to domestic violence and abuse in sexual health clinics: feasibility study of a training, support and referral intervention
Sohal AH, Pathak N, Blake S, et al. Sex Transm Infect Published Online First: doi:10.1136/ sextrans-2016-052866
The NHS generates huge amounts of data but using it to track patient flow and pathways of care requires sophisticated mathematical modelling. CLAHRC PhD student, Ryan Palmer, is “embedded” within one of our partner organisations – North East London Foundation Trust (NELFT) – where part of his work involves offering support and guidance to managers and staff interested in getting the most out of the data they routinely collect.
An example of Ryan’s visualisation of referral patterns between hospital and community services in a busy NHS Trust.
Ryan ran a successful workshop hosted by our research partners NELFT training healthcare professionals how to use network mapping methods for understanding referral data in community healthcare. Care leads who attended came from a range of healthcare disciplines and services, including paediatrics, adult physical health, mental health services and social care.
The two-hour session involved: how to prepare data, how to create network diagrams and the beginnings of discussions as to how these methods may be used to inform service planning. Interest was generated during the session, with many realising the benefits of these methods.
Visualising referral data helps researchers and care managers to work together and understand otherwise overwhelming and hard to interpret data for complex systems. These network maps highlight important characteristics of referral activity and can help identify services that exhibit interesting dynamics. Sharing this work with healthcare professionals, they helped to stimulate further conversations around the analysis and organisation of referrals in community healthcare services.
Our collaborators are currently seeking to implement a single point access (SPA) for older adult community services. This session formed part of the ongoing work with our collaborators to help inform their thinking in designing this SPA.
Research Assistant Moïse Roche enjoyed success at the recent prestigious Health Services Research UK conference in Nottingham.
A poster outlining Moise’s work, as part of our Improving care of people with memory problems in Black African and Caribbean groups study won the People’s Poster Prize at the event – as voted by attendees.
Congratulations to Moïse!
The National Institute for Health Research are asking for comments and ideas on some draft standards for involving people in research.
Help us improve draft national standards for public involvement in research
Invitation to review and improve draft national standards for public involvement in research
Consultation: draft national standards for public involvement in research
During 2016/17, Health and Care Research Wales, the National Institute for Health Research (NIHR), the Chief Scientist Office in Scotland and the Public Health Agency in Northern Ireland have been working with public contributors as the ‘Public Involvement Standards Development Partnership’. The Partnership is developing a set of national, core standards and indicators for public involvement (PI) in research that can be used by organisations, research projects and individuals to improve the quality and consistency of PI.
Here is a summary of the steps we have taken so far and our plans for future work.
As you can see, we would now like to involve you in reviewing and giving us feedback on the draft standards and indicators. Do they capture what good public involvement in research looks like from your perspective? Will they be of practical use to you? What have we missed out? How can we improve them?
The consultation is running from 29th June 2017 to 1st September 2017. Please visit the project website for more detailed information about the consultation process and to access all the resources you might need:
If you have any questions or queries about the consultation please contact the PPI team at the NIHR Central Commissioning Facility:
Email: firstname.lastname@example.org Telephone: 020 8843 8041