The focus of this podcast is on a themed review for the NIHR on the experience of children and young people caring for in mental health, learning disability and autism inpatient settings and explores the focus of the themed review, as well as its aims.
We hear from Candace Imison, Associate Director of Evidence and Dissemination at the National Institute for Health Research Centre for Engagement and Dissemination, and Dr. Shaun Liverpool, Lecturer in Child and Adolescent Mental Health and Wellbeing at Edge Hill University.
Shaun further explains how they were able to capture the experiences of young people in specialist and inpatient care settings, the importance of understanding experience to improve in-patient care and how to translate their findings into practice to make a difference.
Candace also discusses the three key action points, identified from the themed review, to support The Quality Improvement Task Force for in-patient services for children and young people with a mental health, learning disability and or autism needs.
Furthermore, Shaun and Candice talk about what other messages policymakers should take from the themed review, what the implications of their findings are for professionals working in child and adolescent mental health and how to disseminate these findings to have the greatest reach.
You can listen to this podcast directly on our website or on the following platforms; SoundCloud, Apple Podcasts, Spotify, CastBox, Deezer, Google Podcasts and Radio.com (not available in the EU).
Candace Imison is Associate Director of Evidence and Dissemination at the NIHR Centre for Engagement and Dissemination. She oversees the Centre’s dissemination and knowledge mobilisation activity including the production of accessible summaries of important NIHR research findings. (Bio via NIHR)
Dr. Shaun Liverpool is a researcher in Evidence-Based Child & Adolescent Mental Health. Research interests include Shared Decision Making and the development and evaluation of digital interventions. (Bio via Edge Hill University)
Transcript
[00:00:27.829] – Jo Carlowe: Hello. Welcome to the In Conversation Podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Jo Carlowe, a freelance journalist with a specialism in psychology. Today I’m interviewing Candace Imison, Associate Director of Evidence and Dissemination at the National Institute for Health Research Centre for Engagement and Dissemination, and Dr. Shaun Liverpool, Lecturer in Child and Adolescent Mental Health and Wellbeing at Edge Hill University. Candace and Shaun have produced a themed review for the NIHR on the experience of children and young people caring for in mental health, learning disability and autism inpatient settings.
[00:01:07.360] This will be the focus of today’s podcast. If you’re a fan of our In Conversation series please subscribe on your preferred streaming platform, let us know how we did with a rating or review and do share with friends and colleagues. Candace and Shaun welcome. Can you each start with a brief introduction about yourselves?
[00:01:25.671] – Candace Imison: Hi, I’m Candace Imison and as you said I’m the Associate Director of Evidence and Dissemination at the Centre for Engagement and Dissemination at the NIHR and I lead the work the Centre does to promote the communication and uptake of the findings of NIHR funded research and research more generally.
[00:01:44.014] – Jo Carlowe: Great and Shaun.
[00:01:45.065] – Dr. Shaun Liverpool: So I’m Shaun Liverpool. Lecturer and Early Career Researcher in Child and Adolescent mental health and wellbeing. My research interest primarily focus on how we involve children and young people in all stages of their mental health care and treatment. This includes involving children and young people in research that could impact the services that they receive, and I’m also interested in the development and evaluation of digital and blended interventions for children and young people.
[00:02:09.184] – Jo Carlowe: Let’s turn to the themed review and Candace what was its focus and its aims?
[00:02:15.178] – Candace Imison: So the review aims to help those working to improve the experience of young people receiving inpatient care for complex emotional, behavioural or mental health difficulties by providing insight to three key questions. What are the key influences on young people’s experience? What is the best way for us to gain insight and how can that new understanding be used to improve inpatient care?
[00:02:42.197] – Jo Carlowe: Shaun, how did you capture the experiences of young people in specialist and inpatient care settings?
[00:02:48.737] – Dr. Shaun Liverpool: Well in terms of the methodology and approach it was a twofold process really. As well as searching the scientific literature, we also consulted children and young people, their parents and staff with experience of working in inpatient units. We also collected online resources, audits and first-person accounts. As part of the team we gathered information. This meant we conducted broad searches of key research databases and conducted a call for evidence on social media, so experts had the opportunity to provide recent and up to date evidence. We also conducted focus group discussions and one-to-one interviews with young people, parents and staff.
[00:03:29.221] All activities were guided and informed by a Steering Committee as well, made up of various experts in the field, including young people with lived experiences.
[00:03:38.311] – Jo Carlowe: And when it comes to good quality inpatient care, what do these young people and their families say mattered to them?
[00:03:45.834] – Dr. Shaun Liverpool: That’s an important question Jo. We identified four key themes that describe the influencing factors and how children and young people experience in-patient care. First, the quality of relationships. These were the new set of relationships between a young person, their family, and the staff on the in-patient ward. The important interactions and relationships with those outside of therapeutic sessions. These were regular, everyday interactions where staff would be friendly and engage in appropriate conversations. The second theme was young people wanted a sense of normality, because many children and young people are in-patients for a long period it dislocated them from normal life, for example, attending school and that sense of normality.
[00:04:30.315] One article described the experience as living in an alternative reality. Therefore, young people and parents wished for flexibility, autonomy, and capacity to exchange and exercise some choices which they would do in their everyday life. Another thing was the use of restrictive practices, when young people displayed difficult behaviours such as aggression or self-harm in some instances staff may have used physical restraint or medications or seclusions to prevent harm or mitigate the situation. The use of these restrictive practices emerge as having a negative impact on both the young person and the member of staff.
[00:05:08.772] For this member of staff, for example, the experience was upsetting and sometimes triggered feelings of guilt and for the young person it sometimes triggered memories of past abuse and trauma. Therefore, as we said earlier on, these sorts of encounters may affect the relationships between staff and family members. Fourth theme was around the expectations and outcomes of being in in-patient care. Overall, children, young people and their parents or carers agreed that the most important outcomes were improved symptoms such as reduced self-harm or improved emotional and mental problems together with being able to return to function as normal in society.
[00:05:48.008] So all in all, good quality in-patient care centred around factors such as relationships, normality, use of appropriate interventions, and outcomes identify as good quality indicators of in-patient care.
[00:06:01.436] – Jo Carlowe: Shaun, you already mentioned and according to the evidence, therapeutic relationships are the strongest predictor of good clinical outcomes. What did your review show in this regard?
[00:06:14.223] – Dr. Shaun Liverpool: So the synthesised evidence as well as the consultations agreed that therapeutic relationships are a strong predictor of good clinical outcomes. However, the findings from this suggests that in addition to the therapeutic alliance with clinical staff, young people and their families value friendly relationships that may develop with clinical as well as non-clinical staff at in-patient wards.
[00:06:38.203] – Jo Carlowe: Were there any other drivers that are important to mention in terms of good outcomes and experience of in-patient care for young people?
[00:06:46.109] – Dr. Shaun Liverpool: Yeah, that’s a really good question as well. So apart from good relationships, a sense of normality. The use of appropriate interventions and meeting those expectations. There’s still a lot to learn from young people and their parents and carers on what will improve their experience of in-patient care. The review highlighted that the way in which data is currently captured may not be sufficient to paint a full picture. Quantitative data collections alone through questionnaires and surveys may attempt to generalise what more qualitative methods are likely to generate action on useful insights.
[00:07:21.275] So therefore, the concerns about reliability of information sometimes meant that vulnerable people such as those with acute mental health problems are sometimes excluded from giving formal feedback. Findings from the review also suggested that both complements or good feedback as well as complaints about the services should be captured moving forward.
[00:07:43.851] – Jo Carlowe: Once it’s captured though how can understanding experience be used to improve in-patient care? So, in other words, how do you translate your findings into practice to make a difference?
[00:07:55.555] – Dr. Shaun Liverpool: Well, the review highlighted that collecting experience data may not automatically lead to improvements. So generally defined is indicated is that the format of services of feedback matters. Staff may need to have time and capacity to review reports, and this needs to be provided in accessible formats such as infographics, tables, floor charts, etc. Currently, the experience and complaints are often dealt with by different themes, so therefore this sometimes lead to missed opportunities to use feedback from complaints to improve care for future patients. This may also mean that staff may require capacity and authority to take action on some of the feedback in order for it to influence their service provision.
[00:08:39.156] And I think lastly, we may also need to consider the emotional impact of the type of work that the staff do. With this in mind, if staff are adequately supported they may have the emotional capacity to look after the key ingredients that make the experience of the young people better.
[00:08:54.216] – Jo Carlowe: The Quality Improvement Task Force for in-patient services for children and young people with a mental health, learning disability and or autism need were set up in 2019. Your themed review identified three key action points to support the task force’s ambition. Candace can you talk us through these?
[00:09:14.893] – Candace Imison: The first really speaks to what we’ve just been talking about, which is the importance of understanding the key influences on a young person’s experience, and that understanding is a critical foundation of any improvement strategy. So that is the four broad themes that we’ve talked about on the podcast. The quality of relationships between young people, their patients, carers and staff, the degree of normality of their experience, the use of restrictive practice and young people’s expectations and outcomes, and then that can really ensure that staff are focusing on what matters to you in terms of the young person’s experience.
[00:09:58.060] Secondly, as we’ve been talking about, it’s important to use appropriate methods to capture the experience of young people and their parents/advocates and do that in real time. So that will alert staff when the needs of individuals are not being met and it will give them the best chance to identify, intervene and improve that experience. Young people, their parents, carers and staff all benefit when experience is acted on now and not delayed to some sort of post-hoc feedback and actually, as maybe hasn’t come out so strongly from what we said so far, but actually there is quite an evidence gap in this area.
[00:10:39.075] The evidence we drew on about acting on experience was primarily drawn from working with adults. So we said in the review that more work was needed to identify the approaches that are most appropriate for a child and adolescent in-patient setting. Thirdly, improving experience isn’t a straightforward exercise. An individual member of staff can undoubtedly have a positive impact on the experience of a young person but their capacity to drive improvement more widely, to change systems and processes is rarely in their gift.
[00:11:14.800] So they need support to do that. They need support to make sense of data that might be collected. They may need resources and they may need to be given authority to make change. So you need to bring a lot of things together and you need strong leadership and collaboration. And again, we said that more research was needed specific to a child and adolescent setting to help staff do this.
[00:11:44.409] – Jo Carlowe: There’s already a lot there, but what other messages should policymakers take from the themed review?
[00:11:51.178] – Candace Imison: The one other message I would draw out is the importance of staffing as we’ve consistently come back to in what we’ve just been saying. Good quality staffing, enough staff are really key to support those high quality relationships, to reduce the use of restraint and to drive quality improvement more generally. So that’s an area we know there are issues on and they really need to drive change.
[00:12:19.641] – Jo Carlowe: Shaun, turning back to you, what are the implications of your findings for professionals working in child and adolescent mental health?
[00:12:27.994] – Dr. Shaun Liverpool: Conversations with some of the other team members. For example, Dr. Eden Maxwell, I remember having this conversation early on after we received the findings and just to highlight two key implications. One and most importantly was the awareness that young people who require specialist in-patient care for mental health problems, learning disabilities, autism are some of the most vulnerable and at risk young people in the community. So therefore, the quality of their experience is important for their short and long term wellbeing. And secondly, the encouragement to use appropriate methods, as Candace said, to capture the experiences of young people and their families in real time.
[00:13:08.434] – Jo Carlowe: Candace how do you disseminate these findings to have the greatest reach, which also includes engagement with service users and their families?
[00:13:18.556] – Candace Imison: Clearly, that is really critical for us as a centre that is about supporting that dissemination and interestingly for this review for the very first time we’ve worked in collaboration with an art collective called Act with Love, and we presented the key messages from the review as illustrations, which you can see on our website and you can download as a PDF, and we did that deliberately so that those messages would engage with young people and their families, and indeed, we hoped with staff too as a way of conveying things simply and clearly.
[00:13:57.019] Secondly, a really key thing when you’re disseminating findings is to work with the people who need to act upon them, and we did work very closely with the NHS England Quality Improvement Taskforce and we know that they’ve ensured that the findings have been disseminated to people that they are working with in NHS Trusts. And last, but not least, we’ve used more normal mechanisms around social media and indeed things like this podcast to try and help spread the message.
[00:14:28.986] – Jo Carlowe: Do you have the URL for the website?
[00:14:31.875] – Candace Imison: https://evidence.nihr.ac.uk So that’s evidence.nihr.ac.uk
[00:14:47.722] – Jo Carlowe: Brilliant, and that will also have information about the Act with Love project that you mentioned.
[00:14:52.325] – Candace Imison: Yes. So if you put into that in the search bar on the website children and young people, the themed review will come up in your finding, and then that will just keep clicking through, and in fact one of the illustrations from the themed review is one of the first things you’ll see.
[00:15:10.075] – Jo Carlowe: Shaun and Candace are there any other key takeaways from the themed review you would like to highlight.
[00:15:15.894] – Candace Imison: One that I would like to highlight and is something that Dr. Elaine Maxwell, who led on this review and who is a nurse by training felt was very important is the emotional impact on staff. Responding to patient experience can be emotionally very difficult and there’s good evidence for that and in this setting it can be particularly challenging for staff where they’re trying to form bonds and get close to patients, but also sometimes, as Shaun was saying earlier, having to control them and that sort of managing this tension, coping with what can be a very stressful environment can really act in tension with that desire to get close, and it needs sensitive handling. So when you’re trying to do this work and get closer to the patient experience you need to be sensitive to those issues for staff.
[00:16:08.633] – Jo Carlowe: Has that been overlooked previously?
[00:16:10.992] – Candace Imison: I think it often is overlooked for staff, and I think a really strong message from this review that doing this well, managing the experience well actually benefits both staff and the young people who are experiencing their care, but you need to look after both. It is no good just focussing say on the young person’s experience and not thinking about the staff who are looking after them.
[00:16:38.211] – Jo Carlowe: That sounds so important. What else is in the pipeline for you that you’d like to mention?
[00:16:43.295] – Candace Imison: So we’re actually just beginning a review of evidence about how to involve patients and the public better in research and making that genuinely inclusive. This is an area that people have known is important for a long time, but we don’t always do it right and I think there’s actually some real resonance with this review in terms of highlighting the importance and value of voices that can be often seldom heard in driving improvement and better outcomes, and it was quite striking in the evidence that we were able to draw on, as I said earlier, that these voices, the voices of young people, these very vulnerable young people were rarely heard and rarely explored to see what was important to them.
[00:17:28.852] – Jo Carlowe: And finally, what is your take home message for those listening to our conversation?
[00:17:34.008] – Candace Imison: The big message is that an in-patient admission isn’t easy for anyone involved. It isn’t easy for the young person, their family, their carers and hospital staff. So meeting everyone’s needs is challenging but understand and respect everyone’s perspective will be really important to driving improvement in experience and outcomes.
[00:17:58.055] – Jo Carlowe: Candace and Shaun thank you ever so much. For more details on Candace Imison and Dr. Shaun Liverpool, please visit the ACAMH website www.acamh.org and Twitter @acamh. ACAMH is spelt A-C-A-M-H and don’t forget to follow us on iTunes or your preferred streaming platform. Let us know if you enjoyed the podcast with a rating or review and do share with friends and colleagues.