Impact case study database

Our research, which has been co-produced with children and families (and voluntary agencies), has had a major impact on the lives of children and families receiving care within clinical and community settings. We claim four major areas of impact .

Informing the practice of clinical holding or restraint for children undergoing clinical procedures in hospital settings

Published in 2019, the Royal College of Nursing's national guidance for all nursing staff entitled 'Restrictive physical interventions and the clinical holding of children and young people' (source 1) directly refers to our research in relation to defining the boundaries of holding and restraint (pg5) (output 1), and the benefits of a ‘pause’ prior to commencing a clinical procedure (‘ *pause prior to a procedure to discuss and agree with a child and their parents/guardians what will happen during a procedure, what peoples’ roles will be and if necessary what holding methods will be used, when they will be used and for how long (Bray et al 2018)*’ pg6) (output 2). As a result of her publication track record, Professor Bray was invited to be a core member of the guideline writing group. This guidance is already informing clinical practice. Bray’s research expertise was also called upon in 2019 to inform the development of training standards for the Restraint Reduction Network (RRN). The RRN training standards are mandatory in all NHS commissioned services for people with learning disabilities, autism, mental health conditions and dementia. Additionally, they are required to be adhered to for all services that are inspected by the Care Quality Commission. Bray was asked to support the development of these standards ‘ as a result of her published research into clinical holding and restraint’, in particular informing Standard 2.8 (source 2). To further ensure embedding of the research in practice we have run training sessions for health care organisations to raise awareness of the need to reduce the use of restrictive interventions and holding. Feedback from clinicians indicates a change in attitudes and practice, for example “I am more honest now, and have a clearer idea of what is acceptable and what is not” (source 3).

Improving children’s procedural health literacy within hospital settings

Our research centred on children’s health literacy has led to the development of a multi-media resource to support children entering healthcare and the development of a child-centred digital therapeutic platform (https://www.edgehill.ac.uk/childrencomingtohospital\). ‘Children Coming to Hospital’ (CCH) is a multi-media resource including animations (for children and health professionals) and an information sheet which has been co-developed with children to improve their experiences when they attend hospital for procedures. The content of the resource was directly informed by our body of work on children’s information needs and through working creatively with children during drama workshops (Bray et al 2019) and encourages children to have a voice and choice when they come to hospital. The CCH resource is now housed on 3 NHS hospital sites and is signposted on the websites of 4 key organisations. The resource has been freely available to download since its launch in February 2019 and was highly commended by the British Medical Association Patient Information Awards (2019), endorsed by the Royal College of Nursing and selected as a case to demonstrate the real-world impact academic research can make as part of the ‘Made at Uni’ campaign (source 4).

An evaluation project using anonymous online questionnaires and interviews with children, parents and health professionals demonstrates that this resource ‘ makes a difference’ to professionals’ awareness of how to improve children’s experiences of having a procedure, parents’ ability to support their child through a hospital visit and children’s ability to ask “ why are you doing that?” as evidenced in our annual activity report (source 5a). The project lead has presented this work at key events run by the Patient Information Forum which promotes the resource as helping reduce children’s anxiety about coming to hospital (source 6) and the work “ is helping to inform the NICE Babies, Children and Young People Guideline recommendations that the NHS will be required to work towards when they are published in 2021” (source 7). The recognition of our expertise in children’s procedural information needs and preparation led to the award of Innovate UK research funding with an industry partner to inform the development of a child-centred digital therapeutic platform (DTx) (Xploro) https://xploro.health/ for children coming to hospital (output 3). This platform uses ground-breaking technology (chatbot, avatar, augmented reality, 3D procedural) to prepare children for having procedures and our research informed the platform’s rigorous development and evaluation. The DTx is used within the Royal Manchester Children’s Hospital and the Christie Hospital in Manchester and is being translated into Spanish for Hospital Sant Joan de Déu. The work was highlighted as an example of good practice in the recently published national Patient Information Forum ‘Guide to Producing Information for Children and Young People’ (2020) (source 8), a leading publication for anyone developing information resources.

Enhancing conceptual understanding and reducing the stigma experienced by young people relating to the disclosure of a chronic condition

‘Telling My Friends’ is an evidence-based resource consisting of an animation and 3 information leaflets (https://sites.edgehill.ac.uk/cc/\). It was inspired and based on the stories shared by the young people who participated in the Being Me with IBD study (outputs 4 & 5). This resource addresses the challenges and benefits of disclosing a diagnosis of IBD to friends. It was iteratively co-developed with young people from our advisory panel and through other PPI engagement with other people living with IBD to ensure that resource authentically reflects real life experiences, advice and solutions. Our approach means that the final resource is grounded in the reality of disclosing IBD to friends and colleagues in various settings (source 5b). Young people with IBD contributed to the voiceover for the animation. The resource is now being used in children’s and adult hospitals and settings both in the UK and overseas (e.g. Royal Liverpool University Hospital, St Marks Hospital, London – a specialist bowel hospital), and within school nursing teams (e.g. in Sefton Borough). The animation is being shown in the virtual clinic waiting rooms on the NHS Attend Anywhere online clinic system. It has been adopted as a useful resource by Ampersand Health and an app that supports self-management for people living with IBD. The resource is being promoted by Crohn’s & Colitis UK, the UK’s leading IBD support charity (and the study findings have been used in its national campaign #ItTakesGuts “to help inform our work around sharing mental health content with our audiences, to shine a light on the mental health impacts of the conditions” (source 9) . It further notes that the findings from the study feature as part of the Talking Toolkit on the “It Takes Guts” website https://www.ittakesguts.org.uk/talk/talking-toolkit and that “this toolkit has had nearly 3,000 downloads and has been viewed by over 12,000 people since it was launched last year” (source 9). It has also been translated into Portuguese and enthusiastically adopted by Crohn/ColitePT, a Portuguese patient advocacy charity as part of a suite of information and support brochures. This organisation launched the translated resource as the centre of a major campaign in August and September 2020 to coincide with children and young people returning to school, college and University. The President of CrohnColitePT (source 10) notes that feedback from parents and students with IBD shows that the resource is “helping to raise understanding about IBD which is one of our key goals”. Within Portugal the resource has “reach[ed] directly more than 3700 IBD patients’/people with the information being further relayed to many more… and [via] monthly newsletter [to] more than 700 subscribers” (source 10). We are in contact with colleagues in Brazil who plan to disseminate, post pandemic, via their network of IBD nurses.

Enhancing the understanding and practice of the assessment and management of pain in children with profound cognitive impairment

Our portfolio of research and key outputs on the assessment and management of children’s pain extends back 20 years. Our more recent work, e.g., a mixed-methods study using interviews with clinicians and parents (output 6), has focused on children with profound cognitive impairment. Evidence from this study has contributed to the international evidence base as it addresses the challenges faced by both healthcare professionals and parents in assessing pain in this population. This work has underpinned the development of a new resource called ‘Communicating Lily’s Pain’ https://www.edgehill.ac.uk/communicatinglilyspain/. The initial development of this resource arose from both the qualitative research evidence (output 6) and the opportunity of sustained engagement with parents, and collaborative working with a multi-disciplinary team including a theatre director, theatre producer, playwright/writer, and an illustrator/animator. Through presentation of audio-visual soundscape performances in 5 venues, we have interactively engaged with the general public and illuminated understanding. ‘Communicating Lily’s Pain’ is aimed at health professionals and parents with the intention of generating insights into experiences, promoting discussion and enhancing practice. Evidence of embedding change in practice comes from the use of the resource in practice (e.g. Bristol Royal Hospital for Children, Alder Hey Children’s Hospital NHSFT) with feedback from staff attending pain management study days reflecting that their awareness and practice has changed, e.g. “It’s important to understand a patient may still be in pain – even if they can’t communicate this...it’s important to provide to same level of care” (source 11) . A Clinical Nurse Specialist commented “ Discussions arising from these resources have also prompted nursing staff on HDU to request that, in collaboration with the pain team, we trial the different pain assessment tools referred to in the HCP leaflet prior to introducing one of the tools onto the unit" (source 11) . Direct feedback from HCPs (n=>160) and parents via email, survey, in person, social media (source 5c) has demonstrated the importance of the resource, e.g. “oh what a powerful video! It just hits the nail on the head that parents do know their children better than anyone else so our voices are extremely important, and we should feel valued in decision making” (source 12). The Director of Communications and Engagement, WellChild notes that “Based on our metrics the video and resource has been viewed more than 1,000 times on YouTube and more than 250 times from our site)” (source 12) . The resource can also be accessed via other portals; estimated downloads or direct sharing of >800.

As the research evidence about the utility, acceptability and feasibility of the PCI-HN has grown during the current REF cycle, Rogers has driven PCI implementation into routine practice. Consequently, PCI-HN has been recognised by senior policymakers [source 1], national cancer bodies [source 2] and cancer patient groups [source 3] as an effective way of ensuring that HN cancer patients’ concerns are met across the patient pathway.

Embedding PCI-HN

There is evidence of national embedding of PCI-HN. Recognising the importance of the PCI-HN in patient care, the 2014 British Association of Head and Neck Oncologists included a question about the use of the PCI within Cancer Centres in their annual audit [source 4]. However, uptake across England was patchy with only 11% of patients completing the PCI-HN. Despite further monitoring through inclusion of a data item within the Somerset Cancer Register, a data collection system used by Cancer Centres across the country, national uptake of the PCI-HN remained low. Rogers recognised that more widespread implementation required a national IT infrastructure to enhance accessibility. Macmillan Cancer Support had incorporated a generic concerns checklist within their Holistic Needs Assessment package for people living with and beyond cancer, available nationally through an electronic portal (eHNA). Rogers worked with Macmillan to embed 13 items from the PCI-HN into the eHNA [source 5a]. This was the first time that Macmillan included items relating to a specific cancer and was based on the recognition of the robustness of the evidence underpinning the PCI-HN [source 2]. The PCI-HN items were included in October 2018 and a recent analysis has shown that the items are now well-embedded [source 5b]. There has been a year-on-year increase in the number of HN cancer patients completing the PCI-version; in 2020, 2575 HN cancer patients completed the eHNA, of whom 67% completed items from the PCI-HN. The PCI-HN items add value: four of the top 15 concerns raised were PCI-HN specific and patients rated 12 of the 13 PCI-HN items above 5 out of 10 in severity. Inclusion of PCI-HN items has increased its accessibility as the 56 organisations regularly using the PCI-HN version include primary and secondary care, social care, community teams, and private healthcare providers, not just Cancer Centres. As the factual statement from Macmillan attests: ‘the insight that we gain from this additional data helps Macmillan to build a clearer picture of the concerns identified by this group of cancer patients, helping to identify areas for service development and improvement’ [source 5a]. The Macmillan cancer support medical director further explains that integration of PCI items into the eHNA allow not only for improved care for individual patients but provides a national dataset on unmet needs, noting ‘this will be enormously valuable in service planning’. [source 2].

Clinical experience [source 6] in addition to policy and professional body endorsement [sources: 1, 4 and 7] further attests to the benefits for patients of the implementation of the HN-PCI. A consultant clinical oncologist at the Beatson West of Scotland cancer centre and clinical lead for the Scottish Sarcoma network states that the PCI is ‘transforming clinical consultations into person centred’ benefitting both clinical teams and patients. As a result of a positive experience with the PCI-HN, the Scottish Sarcoma Network are developing a PCI for sarcoma patients on follow up [source 6]. The success of PCI-HN has also helped shape and crystallise NHS England’s patient reported outcome measure (PROM) programme. The former Head of Insight at NHS England has confirmed that the PCI-HN played a significant role in their thinking on patient reported outcome measures (PROMS) due to ‘its focus on what mattered to patients rather than what the clinician thought was of importance’ [source 1].

PCI-HN has been upheld internationally and independently as the best patient reported outcome measure (PROM) for revealing unmet need in HN cancer patients [source 8]. Rogers has recognised the importance of ensuring ongoing support and training of health professionals to promote the PCI-HN in practice: for example, UK HN Quality of Life conference workshop 2018 and online training for dental health professionals. A website provides access to the tool ( PCI Head & Neck Cancer | HaNC Support).

Development of PCIs for other clinical areas

Rogers’ dissemination about patient benefit has led to interest in this approach within other HN cancers [source 6] and disease areas. Other cancer PCIs have been developed and validated in breast and one in brain cancer [sources 9,10]. The Rheumatology PCI developed in collaboration with other Edge Hill University academics (O’Brien) is being implemented in practice [source 11; output 5]. A Rheumatology consultant at Aintree University hospital acted as an advocate for the development of ‘a Rheumatology-specific Patient Concerns Inventory’ and notes it has ‘proven to be a positive addition to consultations in our clinical setting.’ PCI use in the rheumatology clinic has helped to identify areas of patient’s unmet needs that were previously not noticed [source 11]. A Burns PCI also developed in collaboration with other Edge Hill academics following focus groups hosted by The Katie Piper Foundation (a national burns charity) highlighting the disparity between burns patients’ concerns and those of their health professionals [source 12].

Rogers’ acknowledged expertise in this area has led to his appointment as chair of the NHS England Quality-of-Life metrics group, which includes steering the roll-out of a nationwide metric, and further opportunity to highlight PCI benefits.

There has been increasing international interest in the PCI; Rogers has undertaken international keynote talks (World ENT Conference 2017, World Congress of Oral Oncology, Brazil 2015) [source 13], leading to other language versions of the PCI-HN and an international research collaborative involving 19 units in 16 countries (output 6). It is anticipated that the recent publication of robust randomised controlled trial evidence of the patient benefits of the low-resource PCI-HN will further bolster implementation nationally and internationally (output 2). Future research will focus on developing PCI-HN for other stages in the patient journey, implementing PCI-HN in virtual consultations and through cloud-based IT systems and the implementation of PCI in other disease areas.

4. Details of the impact

The CAT is an evidence-based, free-to-use, short screening instrument for use in daily health and social care practice and addresses the issues raised in the Department of Health (DoH) (2016) consultation for evidence to support carers. It has filled a gap by providing a brief instrument that can be used by specialist and generalist staff as well as volunteers. It allows quick and timely screening and prioritising of the adult carer needs.  The CAT was included by the NIHR in a themed report of research ‘Better Endings’ (2015) as an example of good practice [A i]. The original CAT has successfully been adapted and piloted in other long-term conditions and a portfolio of CAT instruments has been developed.

Benefits of CAT

There are several key reported benefits of the portfolio of CAT instruments that have resulted in adoption in a variety of settings demonstrating its reach and significance for supporting carers. It can be successfully administered by generalist staff and volunteers providing flexibility of its use and the workforce composition. The CAT has received positive feedback from carers, volunteers and professionals [C i-ii, E ii-iii]. Using the portfolio of CAT instruments allows for carers’ needs to be identified and the provision of targeted support which enables them to continue caring [1-6, A i, B v, E ii]. Carers have provided positive feedback on the impact of the CAT, one family carer made the following comment, “ I felt my needs were acknowledged/listened to; felt my MND Adviser’s responses were appropriate; not telling me what to do but using a coaching style (rather than directing); acknowledged what I said’ [B v]. Using the CAT has reportedly also has a positive impact on the person being cared for alongside other family members, “One carer remarked that using the CAT actually helped them reflect and they identified that they were relying too heavily on wider family support (their children). This enabled them to seek support elsewhere” [B v]. Additionally, the use of the CAT supports attainment of national and international policy recommendations for carer assessment. It also provides management information for service development; for example, data from use of the CAT has led to the expansion of carer support services including the development of new posts nationally and internationally [B iv-B v, E vi].

Adoption of the CAT

The CAT has been adopted in a number of settings both nationally and internationally. The CAT provides a structured approach for organisations to engage meaningfully with family carers, for example adoption for use with people living with motor neurone disease (MND). Following an exploratory study where it was used by volunteers with carers of people living with MND, use of the CAT was included in training received by Association Visitors (volunteers) which enabled carers’ needs to be identified and discussed [B iv]. It is part of a toolkit of support resources used by the Motor Neurone Disease Association’s (MNDA) Area Support Coordinators and Association Visitors with family carers of people living with MND [B i-iii]. Comments have been received from an Area Support Coordinator highlighting the positive impact using CAT has by providing an opportunity to focus on the needs of the carers: “ This helps carers to continue in their caring role which ultimately has a positive impact on the people they care for” [B i]. Furthermore, the CAT was included as a resource in the MNDA response to the DoH call for evidence on improving support for carers [B iii]. The document stated the importance of focusing on carer support and highlighted that carers should not have to reach crisis point before their needs and capability for caring are considered. The CAT was listed as an instrument to use to prevent carer crisis [pg14]. Evidence gathered during use of the CAT across Scotland by volunteers from MND Scotland led to a number of benefits; “ We were able to identify the wishes of carers to be supported by MND Scotland, and as a direct result of that we have developed our Keeping-in-Touch Service. .. This has been particularly important since the outbreak of the Covid 19 pandemic” [B iv]. In this new service, MND Scotland makes individual contact with everyone in Scotland currently living with MND and their carers to determine how they are coping, and if there is anything MND Scotland can do to assist them.

Internationally the CAT has been used by the MND Association of Western Australia (MNDAWA) in Perth to support carers of people living with MND. As a result of the positive feedback they received from these carers regarding the CAT, the MNDAWA has decided to include a focus on family carers in the job description of all MND advisors. Furthermore, adoption of the CAT has enabled them to collect more data on carers that is now stored alongside the patient data [B v]. Additional international reach of the research is shown through development of CAT as an electronic screening tool in the Princess Margaret Cancer Centre in Toronto (Canada). Colleagues there have secured funding for two posts to pilot the electronic CAT for caregivers of patients who are attending the outpatient palliative care setting [E iii].

The adaptability of the CAT for use across long-term conditions has been evidenced by the successful pilot and implementation of the CAT-S by the Stroke Association [C i]. More recently, the Stroke Association found that “ utilising the CAT-S was beneficial to carers as it helped them to recognise their own needs and seek support; supported staff to prioritise the needs for support and identify carers most at risk; and facilitated discussions on difficult or sensitive topics” [C ii].The Stroke Association implemented the CAT-S for carers of service users across the Liverpool region [K]. Following successful piloting and further adaption for use with young carers the CAT-YC has been embedded as part of the developing well-being pathfinder programme to be delivered in primary and secondary schools to facilitate the assessment and support of young carers led by Barnardo’s Action with Young Carers Liverpool Service. Planned roll out was delayed due to the pandemic [D i].

The value of the CAT is further demonstrated through its recommendation by a variety of key figures including authors of the International Palliative Care Family Carer Research Collaboration (IPCFRC) . It was recommended for use with carers of patients with respiratory disease and highlighted for having an advantage over other instruments due to the specificity of its design for clinical practice [F i]. It was also recommended as a resource for use with carers in Australia by the palliative care knowledge network [F ii]. It was also recommended in a professional journal for end of life care [F iii] and reported in a palliative care textbook [F iv].

Embedding of the CAT in training as part of the Gold Standards Framework

Since Autumn 2016 the National Gold Standards Framework (GSF) [E i] (recognised by Care Quality Commission (CQC) and professional bodies) have promoted and recommended the CAT for the assessment of carers’ needs. The GSF formalises best practice and impacts on the care of half a million people each year across all care settings in the final year of life. A key element of the GSF in all training programmes is the support for carers. In partnership with Hospice UK, the GSF Centre is the leading training provider in the UK for front line staff caring for people in their last year of life. They train over 500 health and social care teams each year. The GSF team have made the following comment about the CAT, “We think [it is] a valuable resource for health and social care staff needing a short screening assessment of carers. This [CAT] would enable carers’ needs to be identified and the provision of targeted support, which enables them to continue caring and reduce avoidable hospitalisation”. Currently, as part of the Quality Standards Framework review, the GSF/Hospice UK team have also proposed the CAT for national implementation in the ongoing 2020/21 (NICE) End of Life Care Quality Standards Consultation [E ii].