Burns, cosmetic surgery, collaboration and more
Burn injuries affect around 250,000 people in the UK each year and can have a marked impact on wellbeing. While many standardised questionnaires, known as PROMs (patient reported outcome measures), exist for patients, few are specific to burns. Dr Catrin Griffiths opened a symposium, featuring speakers from the University of the West of England’s Centre for Appearance Research (CAR) in Bristol, with her research to develop a burn-specific PROM questionnaire to better identify what this population needs in terms of care and support.
So far in her work Dr Griffiths has conducted two systematic reviews on PROMs currently used in adult and paediatric burn care. She has also carried out interviews with patients and family members about living with a burn injury, drafted and had patients and healthcare professionals review the PROMs, and put the PROMs through a large psychometric study with the final survey expected to be published soon.
The scale, known as the CARe Burn Scales, assesses psychological, social and physical wellbeing as well as a number of domains related to appearance. These measures of appearance-related domains came out in Griffith’s interviews, she explained some of the key factors which patients and healthcare professionals raised.
Scarring can have a huge impact on people’s lives: Griffiths said some people can struggle to adjust and just the process of looking in a mirror can lead to people remembering the potentially traumatic event that caused the injury, as well as not being able to recognise themselves. These changes in appearance came out as one of the hardest aspects of living with a burn injury, in spite of the huge amounts of physical pain they cause.
Appearance is also a key part of social functioning (see image above, by Joanne de Nobriga). Patients reported having increased attention and unwanted comments after their injuries drawing their own attention back to their scarring. A fear of this kind of reaction led people to avoid intimate relationships, social situations and hobbies like swimming, and as Griffiths explained this gave patients short-term relief but, in the long run, led to increased anxiety associated with those activities.
However, many people said social skills helped them cope. Over time and with experience and support from psychologists, friends and family, people built stronger social skills which helped with their general confidence. The huge importance of social skills, Griffiths said, would be a key area which psychologists could be involved with.
In interviews with healthcare professionals Griffiths found some of the key things in helping people with burn injuries was having an awareness of an individual’s cultural background and how this can affect adjustment and engagement. Some cultures place a lot of emphasis on appearance and this, at times, can be a barrier to patients receiving appearance-related support. Clinicians also said appearance concerns change over the lifespan so it’s key to measure them regularly. Four of the subscales within PROMS measure appearance concerns, including scarring, avoidance behaviours, social skills and romantic relationships. Once it is published the scale will be available via www.careburnscales.org.uk
The cosmetic surgery industry, while showing a slight slump in 2016, is still incredibly popular, with around 30,000 procedures reported by the British Association for Aesthetic Plastic Surgeons (BAAPS) last year. Dr Nicole Paraskeva said that while a majority of people are satisfied after procedures, with improvements in quality of life and self-esteem experienced by many in the short term, there’s a large group of people for whom such surgery isn’t appropriate.
Those with unrealistic expectations and motivations and underlying psychological disorders have a greater risk of poor outcomes post-procedure. Those people who have extrinsic motivations for surgery, such as pleasing a partner or getting a promotion, rather than doing it for themselves, tend to have poorer outcomes. Those with psychological disorders, especially those related to body-image, can also experience bad outcomes, and indeed there is a higher prevalence of psychiatric disorders in the cosmetic surgery population.
Paraskeva pointed in particular to those with Body Dysmorphic Disorder, in which people have a hugely distorted view of how they look, often focused on one part of the body, who can experience worse symptoms after surgery or may become fixated on a new area of their body they’d like to change. She also said there is a clear need to screen patients who may be at risk for poor outcomes. Psychological screening can help tell surgeons if procedures are appropriate, whether patients may need some support before surgery or whether surgery shouldn’t be carried out. So far only a handful of screening tools for cosmetic surgery patients exist, many of which are long, difficult to administer and score, and relatively expensive if an expert is needed to facilitate them.
Researchers from the Royal Free Hospital and Centre for Appearance Research developed a short questionnaire to tap into key psychological processes of body dysmorphic disorder, avoidance behaviours and unrealistic expectations, called the RoFCAR. Paraskeva worked to see if the scale could be used in plastic surgery practices. After a pilot study the RoFCAR was used in 12 private practices followed, after a year, by semi-structured interviews. Paraskeva found the tool helped surgeons and surgery staff to trigger conversations about psychological issues, surgeons also said it was helpful to use, as well as normal consultations, to see if patients were suitable, and gave them the confidence to turn down patients who weren’t.
Paraskeva said the results were promising but hoped in the future to get feedback from patients and also explore populations having non-surgical procedures such as Botox injections as well. She said she hoped to establish if the tool improves the likelihood of patients experiencing positive outcomes post-surgery.
For her PhD research Ryc Aquino (City University of London) has explored the barriers and enablers to midwives and health visitors working together. While both are encouraged to collaborate it’s unclear the extent to which they do. Aquino first carried out a systematic review and found both professionals value working together. Later she interviewed 15 midwives and 17 health visitors and found a contrast between those who did and did not know the protocols and processes for doing so. However, the most frequently mentioned enablers and barriers involved communication between midwives and health visitors in the perinatal period. She said there was much scope for an intervention thanks to the research and added there should be an organisational, as well as individual, focus on encouraging dialogue between both.
Eileen Calveley (Nursing, Midwifery, and Allied Health Professionals Research Unit, University of Stirling) carried out a pilot randomised control trial of the Person-Centred Assessment Method (PCAM). This nurse-led assessment tool was used with patients in GP practices who had long-term conditions, such as diabetes, whose physical symptoms are often the main focus but for whom more holistic psychosocial support could improve their self-care and wellbeing. The PCAM is a simple tool to help nurses identify biopsychosocial needs and helps explore five domains: health and wellbeing, social environment, health literacy and communication, support for clients and actions. Nurses were also provided with a list of relevant local and national services to point patients to. Patients welcomed being able to discuss wider issues with nurses and nurses themselves said the PCAM helped support a positive patient-nurse relationship.
While those experiencing active relapsing remitting MS (multiple sclerosis) should be considered for disease modifying therapies (DMTs), rates of prescribing these drugs remains low in the UK. Dr Elaine Cameron (University of Manchester) has worked to uncover what influences prescribing of these drugs speaking to neurologists and nurses. She found in England neurologists adhered to NICE guidelines for each of the 11 categories of drugs, while in Northern Ireland prescribers more often used Association of British Neurologists guidelines – which were reported to be open to interpretation. Many of the drugs can have serious side effects and neurologists noted uncertainty over the balance between risks and benefits of the disease vs the drugs. Another inconsistency emerged from the interviews: while some doctors gave patients the choice of all 11 classes of drug, some were only told about four or five of them. Neurologists also used their peer networks to see where others sat on the prescribing spectrum and worked within their local prescribing culture. If a specialist MS neurologist is not available, general neurologists may have to prescribe, and MS nurses can also be gatekeepers to these drugs, and general neurologists may not be as up-to-date with research in the area. Cameron said there was a need for consensus and clear definitions so interpretation of guidelines could be reduced, she said there was need for a debate on whether equitability of care was more important for people with MS or whether this approach would stamp on prescriber autonomy. General neurologists and MS nurses also need to have enough training and information to help them make the correct decisions for patients.
Despite the many benefits of educating children and young people about sex and relationships it remains a controversial issue. However, Dr Triece Turnbull (Senior Lecturer at the University of Northampton) has worked on numerous projects over the last 15 years to improve sex education and sexual health provisions for young people. This has involved working with schools, policy makers, healthcare professionals and commercial companies (e.g. Durex and Consilient Healthcare) to improve the provision of sexual healthcare in the United Kingdom. Although in the past there have been inconsistencies in how sex and relationship education (SRE) should be taught, this spring the Children and Social Work Bill ruled that all primary and secondary schools must teach SRE from 2019. The bill also recommended involving, not just teachers, but also parents and healthcare professionals to provide a universal approach to sex education.
The most recent intervention that Dr Turnbull has worked on is the Bradford Speakeasy project, an eight-week course for parents to learn how best to speak to their children, in an age-appropriate way, about numerous sex and relationship issues. Dr Turnbull evaluated the course by speaking to staff, parents and families to identify how it could be improved, and how parents now felt about talking to their own children about sex and relationships. Upon evaluating the SRE intervention it was found that the programme had helped parents become more knowledgeable and confident when having conversations to educate their own children about sexual matters. Furthermore, staff who worked on the programme felt that although it needed to be modernised and better promoted, overall there was an increase in their own confidence and empowerment in discussing sex with parents and their own children. In talking to parents, Dr Turnbull found themes to indicate increased knowledge and confidence, as well as improved communication between other parents. They also felt safe to talk about different sexual matters and address sensitive issues. During the time of the study grooming was very much in the headlines, and parents found they had learned information during the course to help keep their children safe.
Dr Turnbull said this study helps to build the basis for what should be included in terms of SRE in schools and communities in the future especially with parents who have a fundamental part to play in educating their own children. The next steps that are needed is to develop a plan of work for the different key stages in schools that can be rolled out across the country and then utilise the skills of healthcare professionals and the influence that parents have over what their children learns, especially regarding sensitive topics of SRE.
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