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.
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!
Palliative care for children and young people with life-limiting conditions and life-threatening illnesses is a relatively new discipline, and one where current practice in services has developed beyond the evidence base available. Barriers to conducting research in this area are numerous, and span the entire length of the research process.
CLAHRC researchers from the BRAVES project, based at the Louis Dundas Centre, are working to identify these barriers to recruiting children with life-limiting conditions to research, and to develop solutions.
“Establishing robust evidence is going to require concerted effort on everyone’s part: clinicians, parents, patients, and researchers.”
Professor Myra Bluebond-Langner, principal investigator on the BRAVES project, has recently recorded a podcast with the journal Palliative Medicine, discussing the need for an increased understanding of barriers to research in paediatric palliative care, findings from the project so far, and outlining the future research planned by the team.
Initial findings from the study, and previous work at the Louis Dundas Centre, have suggested that fundamental barriers exist at both the individual level, e.g. clinicians’ attitudes to involving young people in research, as well as at the institutional level, e.g. ethics committees and resource constraints, even though children and young people want to participate in research.
“So, why, if we no longer accept paternalism in clinical practice, are we willing to accept it, indeed demur to it, in research practice?
The overall goal of the BRAVES project is to develop guidance based on the experience of all stakeholders, which in turn will help to develop the evidence base in the field of paediatric palliative care.
Based on the findings outlined in the podcast, the research team has since conducted a study investigating the experiences and difficulties of chief investigators recruiting children and young people with life-limiting conditions and life-threatening illnesses to research. The findings from this study are expected to be published soon. The next step for the CLAHRC researchers is to analyse data collected from a nationwide research groups’ applications to Research Ethics Committees, and to interview members of these committees to develop further insights.
Click here to read the journal article on which this podcast is based.
A new report from healthcare think tank the King’s Fund sets out progress in delivering the Getting It Right First Time (GIRFT) programme deliver improvements in quality and reductions in the cost of orthopaedic care in England.
Tackling variations in clinical care Assessing the Getting It Right First Time (GIRFT) programme gives an overview of the programme, how clinicians have responded and what it has already highlighted in terms of variations of care across the NHS.
The CLAHRC is carrying out an evaluation of the planned changes to orthopaedics, to identify lessons to inform future efforts to improve the organisation and delivery of services.
The CLAHRC Academy held its latest installment of the popular Introduction to Evaluation workshop on Tuesday 13 June.
With 28 delegates from a wide range of NHS Trusts, Local Authorities and CCGs, there was in-depth discussion and engagement around all aspects of the evaluation process.
Throughout the day, delegates applied what they had learnt to create their own plans for service evaluations, and shared ideas and experiences with tutors and each other.
A few comments from our participants:
“Vey engaging, I particularly enjoyed/liked the exercises after each session.”
“A good comprehnsive overview of evaluation technniques“.
“Very professional & informative. Useful & applicable to the work I do.”
Thank you to all those who attended – your engaged participation made for a very interesting workshop.
Interested in attending this course? We will be running the Introduction to Evaluation workshop again on 13 December 2017: click here for details.
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